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Name:

Dr. Howard Glazer

Email:

DrGlazer@att.net

Date:

1/26/2002

Comment

Welcome to the Eighteenth Vulvodynia Guestbook. Pleae let me remind all visitors that the guestbooks are for new visitors to the website to post their remarks after viewing the website. For ongoing communication amongst visitors to the site please use the broadcast email lists at http://www.vulvodynia.com/mail.htm or the live chat room at http://www.vulvodynia.com/chat.htmThanks for your continued participation in the vulvodynia website. A quick announcement, I have just opened my Boston, MA office for the evaluation of treatment of vulvar pain patients with pelvic floor muscle surface electromyography. Please do not hesitate to email me. Howard I. Glazer Ph.D.Clin Assoc Prof of Psychology in Psychiatry and ob/gynCornell U. Medical College/NY Presbyterian Hospitalowner, vulvodynia.com website

Name:

Email:

Date:

1/27/2002

Comment

Just a note for Leah. I know that Dr Stewart is doing her best to help us, but she told me the same thing. To be exact, I believe the nerve that she is telling you about is the pudendal nerve. I asked her why I was having this weird green discharging only after a flare up (I tested negative for all yeasts and std's) that was actually relieving the flare up. She told me that the pudendal nerve and the pinching can cause all kinds of discharging and a host of other problems. But when I went to see Dr Davis, he said that was poppycock! he said it had nothing to do with the nerve at all, and after examining me gave me a completely different diagnosis and treatment. She loves to give neurontin, he looks for a root to the problem. I think you should get a second opinion just to be sure, I think she is telling us all the same thing. By the way, the neurontin did nothing for me, just as Dr davis said it would not, with what I have. So, I know she is doing her best, but I suggest to all to find a dr who specializes in vulvar disease, no matter where you have to travel.

Name:

D.

Email:

Date:

1/27/2002

Comment

Leah,I have found that the only kind of chirpractic that works for me is Active Release Therapy. A woman named Tammy used to write on the site about how much it helped her, and so I decided to give it a try. I am seeing an EXCELLENT therapist named Dr. William Brady, who works in Boston. He works on the clenched muscles that surround the damaged and inflammed tissue, making the muscles relax, so that the nerves can begin to function within the tissue once again. He looks for the trigger points of tensed muscle. I have seen him since mid november, and I already feel signifacantly better. Dr. Stewart has been very interested with my results. Tammy's doctor in Needham turns out to be my doctor's best friend. Therefore, My doctor spoke with him to discover what particular nerves to attack. If you are interested I can give you his #. You have to make sure that you see someone who has been trained as an Active Release Therapist (they need a degree).

Name:

joan hoover

Email:

Jcjhoov@aol.com

Date:

1/27/2002

Comment

I have suffered from vulvodynia about 5 months now. I can not sit or lay now without pain. I have very intense itching and burning in my legs and feet. Could I have a nerve condition along with my problem? I have seen three or four doctors and they could not help! Can anyone relate to this?

Name:

Email:

Date:

1/28/2002

Comment

Hello:Has anyone been prescribed EFUDEX for HPV. I wasfirst told to use Aldara, but I refused hearing that it was dreadful to the skin, with intense burning. But I don't feelthat this Efudex will be any better, it may even be worse.

If you have any info on this please post. Please.Thank you.

Name:

Leah

Email:

Date:

1/28/2002

Comment

D: thanks for the info on chiropractic work. I will try to find someone in Colorado where I live. Any suggestions? I saw Dr. Stewart in Boston because my family lives in NH and there are no Docs. in the area who specialize in vulvar disease. How can I get in touch with DR. Davis? does any one have his information? Thanks for all the help!

Name:

Mike

Email:

mike@faithadventure.com

Date:

1/28/2002

Comment

Hi,

My name is Mike and I am the husband of a Vulvodynia sufferer. Our pain is only present during intercourse, but it is quite substantial. We have been married for 4.5 years and have had intercourse probably 8-10 times, each time with pain and frustration. We have managed to conceive 2 children, unfortunately, we had to have 2 c-sections, so we couldn't find out if regular vaginal birth would have helped.

We live in the Seattle area and are becoming more and more discouraged. Here are the common comments from docs that we hear:

-it's in your head, get counseling-there's not that much research in the area-vulvar pain is pretty rare

All of these seem to be not true. I have a couple of questions though.

Are there any forums for husbands of sufferers? Is there any new research? Does anyone know of any resources in the Seattle area.

If so, email me and/or post it on this site.

Thanks

Mike

Name:

Email:

Date:

1/28/2002

Comment

For Leah: Dr Gordon Davis, M.D., FACOG, Vulvar Diseases, 300 West Clarendon, Suite 100, Phoenix, Az 85013; I think the area code is 602, as he does not have the area code printed on his card, 265-1112. He has a good website also I think you should check out: arizonavulvaclinic.com. good luck!

Name:

susie

Email:

susieeleanor@aol.com

Date:

1/28/2002

Comment

How about vaginal pain during intercourse 4 yrs after last period?Cannot use HRT,had a stroke in l984.Any ideas appreciated!

Name:

christina_bunny@hotmail.com

Email:

Date:

1/28/2002

Comment

Hey Ladies,

I have just read and signed the online petition:

"Depo Provera"

hosted on the web by PetitionOnline.com, the free online petitionservice, at:

http://www.PetitionOnline.com/Depo/

I personally agree with what this petition says, and I think you mightagree, too. If you can spare a moment, please take a look, and considersigning yourself. This drug has done a lot to cause me problems and I think it would be a great thing to get the FDA to take it off the market.

Best wishes,

Christina

Name:

Frank B.

Email:

Date:

1/28/2002

Comment

To Mike: I started reading and posting on this site with guestbook thirteen. This is my forum for information and exchange of ideas. I have found this whole experience very depressing at times, the doctors are either unwilling or unable to offer much in the way of treatment. They either dismiss the symptoms altogether or guess at different medications. I am not aware of any substancial research being done and I feel there are several different illnesses clumped into the term Vulvodynia. Your wife suffers from pain during intercourse, my wife gets recurrent tears to the skin of the vulva, many women have extreme itching, pain, inflamation and discharge. Too many symptoms to be just one specific illness. All I would offer to you and your wife would be enjoy whatever sexual and emotional closeness you can on whatever level you can manage. Be very cautious of experts claiming cures, it is not in your wife's head. Lastly imagine you have a similar pain in your most private parts, this helps me when I get frustrated. I haven't heard anything posted on the National Vulvodynia Society in quite a while so they may just be information group. Best of luck to you and feel free to post again there is nothing too personal. My wife won't post here because she feels nothing can be done so why bother. I like the thought of exchanging stories in the hope of learning something and also avioding problems down the road.

Name:

Jeanne

Email:

jeanne_ellen@yahoo.com

Date:

1/28/2002

Comment

D-Could I have more contact info on Dr. William Brady? I have interstitial cystitis and would like to try active release technique in Boston. I was going to call Dr. Gale, but Dr. Brady should be closer to me. What problems did he fix for you?Best,Jeanne

Name:

ann

Email:

amwolk@hotmail.com

Date:

1/29/2002

Comment

i recently just stopped taking the elavil.. i was taking 50 mg. a day for about one year. i just didn't think it was working for me. i still had pain and the side effects (tired, weight gain) were just too much. my doctor wanted to wean me off but i just stopped. has anyone experienced any withdrawal sypmtoms from going off the elavil. i have been feeling lousy the last few days. no appetite, little energy, upset stomach. could this be from the withdrawal. please reply to my email if anyone has any comments.

Name:

B

Email:

Date:

1/29/2002

Comment

Has anyone tried guifenisan? Dr. St. Amand suggests this for people with fibromyalgia. He also thinks that vulvodynia is a form of fibromyalgia. I have vulvodynia and was thinking about trying this... if you look online you can find his website and explanation. Thanks

Name:

Mike

Email:

mike@faithadventure.com

Date:

1/29/2002

Comment

I found a way to get around insurance!!!

I just posted something yesterday for this first tiem on this site, but also had a revelation of sorts later in the day.

Our insurance covers nearly nothing that has to do with my wife's vulvar pain. It only coves stuff that her primary care doc refers to other specialists inside the HMO.

My wife and i have found that after looking over the web at any site that contains the key words vulvar pain, vestibulitis, vaginismus, vulvodynia and much more as well as buying every book that has ever been written on women's health; we find that every "specialist" that we are referred to inside our HMO knows considerably less than we do about these issues.

We did however find an awesome doc that sympathesizes with us and has been combing through research just so that he can speak intelligently to us about the issue. He said that he'd be willing to do any treatment that we would like him to try. However, we are not doctors and don't want to keep doing the trial and error method that we've been doing for the last 4 years. We'd like to see a specialist and have someone who know's something give us an opinion.

To make a long story short, we learned about a new doc in our area the other day that has opened up a "vestibulitis" clinic in the Seattle area. Only our insurance won't touch him. So we got our OB/Gyn who will try any treatment to agree to communicate with that doc. All we have to do is go see the guy in Seattle and pay for the office visits and he will reccomend treatment that our HMO doc is willing to do.

I know, I know, there are many so called "experts" out there that will claim to have answers, and I'm sure that some can help us and some can't. But we weren't even able to see one because of how closed-minded our insurance company is. This is a huge step for us.

Mike

PS. I personally went to see a new primary care doc cince mine retired. I got into a discussion with him about the vulvodynia that my wife suffers from. I let him know that we have had intercourse a total of 10 times or so since we were married 4 and a half years ago. He dropped my medical chart on the floor. He asked how many times I had sex outside of marriage, when I told him none, he dropped my chart again. He couldn't believe it.

Name:

D.

Email:

Date:

1/29/2002

Comment

William Brady's info:

15 Court Square, suite # 350(617) 367-3110Boston, MA

For people looking for ART therapists in their area. try google. I know I came across a site that listed all the Active Release Therapsts around the country. I spoke with Brady today, and he said ART would be perfect for pinched or stuck nerves. I know those web sites explain it better than I do. Basically, he puts pressure to release the muscles, which, in turn, allows the nerves to heal. good luck!

Name:

Mary Ann

Email:

mdlowry@dock.net

Date:

1/29/2002

Comment

I am a support group leader for women with vulvar pain living in the greater L.A. area. From numerous phone calls, letters, e-mails, and personal stories shared during our meetings I'm learning that there are definitely many culprits responsible for this horrendous pain condition. Some women have the oxylate sensitivity, or hppv or pudendal nerve damage. My symptoms involved substantial spasms of the pelvic floor. The tissue felt tight like it was being pinched, pulled, stung, etc. Through blessed guidance I pursued help outside of the ob/gyn field and found that I in fact had vulvar pain as the result of a muscular skeletal problem. I consulted an orthopedic surgeon in Atlanta, who specializes in sacroilliac dysfunction. He confirmed the diagnosis that other med. doctors in the orthopedic and physical medicine field had found. He shared that pelvic floor myalgia/dysfunction (vulvodynia is one of the complications) is a major symptom of an unstable S.I. joint. So far I've met other women with severe muscular spasms, who are also learning they have the same issues. The literature and info re: this muscular/skeletal issue has yet to be recognized by the OB/Gyn's. This can be treated. I'm living proof that with proper treatment I have finally gained significant relief. The treatments that have helped are pelvic floor rehabilitation through physical therapy, prolo therapy (a series of injections to strengthen the ligament tissue supporting the SI joint) in serious cases Dr. Alan Lippitt is the only doc in the U.S., who can successfully perform a fixation surgery to stablize the joint. I've been on the net and done the research, so far I've found little but token comments regarding muscular skeletal factors that might be contributing to this condition. I share this , because the others I've sent for consultation have received the same diagnosis and been helped significantly. God Bless You All. I feel like I've been rescued after five years of suffering. Don't give up hope. You may need to consult with other M.D.'s other than OB/GYN's.. Let me know if I can answer questions. Maryann

Name:

B

Email:

Date:

1/29/2002

Comment

Leah-- I used to live in CO and I found Dr. John Slocomb to be very helpful. He is at the U. of Colorado Health Sciences in Denver. I don't know where you live, but I live in Boulder and Denver and found him to be very helpful and caring. He is an obgyn and he is very knowledgeable about vulvodynia/vestibulitis. He attends all the conferences on this disorder and seems to be up on any new things that are out there. Just thought I'd give you his name if you haven't heard of him.

Name:

evelyn

Email:

evelyn_paz10

Date:

1/30/2002

Comment

I have a lot of problems in my pelvic area, urinary frequency and vulvar pain. I will go to a physical therapist. What can I expect? what kind of exercises and therapy they use for the frequency?, and for the vulvar pain? I'm askin because I have a pacemaker for my bladder, to help the frequency, but my doctor suggested me to see a therapist. But I am not able to receive microwave therapy, electrodes that sends electrical impulses, etc... Can they help me just with manual therapy? PLEASE HELP ME!

Name:

Shawn

Email:

shawn@majordiesel.com

Date:

1/30/2002

Comment

MIKE and FRANK: I am from the Seattle area and have been suffering for 4 years....I recently found Dr. Eschenbach at the University of Washington Women's Medical Center. He is one of the best in the field....I did my research. (Make an apointment with Dr. Delatori...she is great and Eschenbach is part of the deal!)Both my husband and I feel like we are finally on the right track. Feel free to email me if you would like more info.

Name:

Elizabeth

Email:

timbes@sprintmail.com

Date:

1/30/2002

Comment

This is a reply to Maryann's comments. I have suffered from vulvodynia since 1995. I did manage to get pregnant and during the pregnancy had terrible sciatica. I went to see an orthopedic surgeon who recommended physical therapy. It was actually the physical therapist upon examining me who asked if I had any pain in my pelvic area. I was shocked and he said, if I can remember correctly, that my S.I. joint did not rotate on one side. Again I am going on memory. So, is this what you are referring to? Did you receive treatment in Atlanta or L.A.? And are you completely bette? This is the first time I have been on this site in awhile so I appreciate you sharing this information.

Name:

Frank B.

Email:

Date:

1/30/2002

Comment

To Shawn: Thanks for the thought. If you have read my many posts you know I have a tough getting my wife to see a doctor in our own town much less in another state. We are presently able to have sex without causing the tearing problem if we are careful. I know there are many different symptoms and probably even more causes yet unknown. I thank you again for your caring but for now I will just sit tight and hope meaningful reasearch will be done. We saw " The Expert" in our state and he just wanted to dope my wife up with Elivil. Certainly medicine can offer more than this ,it is just a matter of time. Best of luck with your treatment.

Name:

Maryann

Email:

mdlowry@dock.net

Date:

1/30/2002

Comment

Elizabeth, I have been receiving ligament injections in L.A, called prolotherapy. This has been a wonderful adjunct to pelvic floor rehabilitation, because it helps to stablize the S.I. joint. I'm a lot better, but still have a level 2-4 pain. The orthopedic doc in Atlanta feels that I need the SI fixation stablization surgery to permanently stablize the SI joint. However, he was alarmed when he saw my MRI, which the report indicated showed nothing of significance. He recommended I saw two doctors in Santa Barbara,CA. who specialize in treating disc tears. Apparently a tear in the L5-S1 will refer pain to the pelvic region which leads to sciatica and severe muscle spasms. They did a procedure called coccyx mobilization, which is a bit invasive. Yet, it gave me a lot of relief. My tailbone was jammed. When they manipulated it rectally, they could feel the adhesions that might be related to a bad fall. I'm much better, but still not pain free. However, I've reclaimed my sex life. That is a major win for me. My husband and I once thought that was gone forever. I hope this helps. The orthopedic doctors know more about pelvic floor dysfunction/vulvodynia than the ob/gyn's know about muscular skeletal connections to this problem. Let me know if I can answer more questions. M.A.

Name:

Becky

Email:

bkdris@coin.heartland.com

Date:

1/31/2002

Comment

I'm so glad to find this web site.I was diagnosed with Vulvodynia on 1-29-02 I had problems with this for 3 yrs. I did'nt know what I had .First I had yeast infections.I had a doctor tell me that I was going through menopause so she presribed medicine for menopause to me.Then I had a stroke from being on the medicine. I had eye specialist tell me to quit taking this kind of medicine due to the blood clot over my retina. I lost the vision in my left eye.I won't get my vision back.I would have my vision if I would have went to a OB/GYN .I finally went to good OB/GYN she visited with me and checked me over and she told me I was not going through menopause.and that I had Vulvodynia she presribed 25mg of Elavil and told me search the enternet for information on this condition. right now I'm trying the low oxalate diet but I do'nt have a very good list of all the things we can have. I would like anyone's input on this. thanks! for listening to my story.

Name:

Becky

Email:

bkdris@coin.heartland.com

Date:

1/31/2002

Comment

I'm so glad to find this web site.I was diagnosed with Vulvodynia on 1-29-02 I had problems with this for 3 yrs. I did'nt know what I had .First I had yeast infections.I had a doctor tell me that I was going through menopause so she presribed medicine for menopause to me.Then I had a stroke from being on the medicine. I had eye specialist tell me to quit taking this kind of medicine due to the blood clot over my retina. I lost the vision in my left eye.I won't get my vision back.I would have my vision if I would have went to a OB/GYN .I finally went to good OB/GYN she visited with me and checked me over and she told me I was not going through menopause.and that I had Vulvodynia she presribed 25mg of Elavil and told me search the enternet for information on this condition. right now I'm trying the low oxalate diet but I do'nt have a very good list of all the things we can have. I would like anyone's input on this. thanks! for listening to my story.

Name:

donna

Email:

Date:

2/1/2002

Comment

Becky:Check out branwen.com for a list of low oxalate foods.The listing is very complete and this is what I follow.

To All:Would anyone know of a cake mix on the market that does not contain proplyene glycol?Every mix I have checked contains this.

Name:

C W

Email:

Date:

2/2/2002

Comment

You know I haven't been to this site in months, cause I got tired of reading posting after posting from the same people looking for conversation from people. I was coming on here to see if there was any new info on the VV and related topics. If ya'll want to chat with each other then you should either go to the chat room or put your email address so you can converse with each other personally, so the rest of us don't have to read these postings. It gets alittle tiring to have every couple of postings being from the same people all the time. It's one thing to be new posting your problem and looking for support, but when you have been hogging the books for your own personal "forums" for months, it's not fair to the rest of us looking for new ideas or treatments in this area and to the new ones who are looking for answers. Give the rest of us a break and either go to chat room or give out your email addresses so you can talk to each other one on one. Sorry Dr Glazer, I've enjoyed your site for almost 2 yrs now, but doubt I will be back until the people who are using your site for their own personal "forum" stop posting. C W

Name:

Clarkie

Email:

kate_c73@hotmail.com

Date:

2/3/2002

Comment

This is my first entry and I've been reading this site only recently. I am 27 am went undiagnosed with vulvar vestibulitis for about 10 years and was unable to have intercourse at all until Nov.2001! I am a patient of Dr. Elizabeth Stewart and am currently on 120 mgs. of Elavil daily, Estrace once a day and doing ongoing biofeedback/physical therapy with Raquel Perlis in Wellsley, MA. The work I've done with Raquel has been the most encouraging and I have been lucky to see improvement and less pain.

I have found the information shared here helpful and I am going to look into Active Release Technique and Acupunture due to nagging lower back issues and a slight scoliosis issue.

I am curious if there are some folks still attending a support group in the Boston area. I thought I read something about a group in Somerville. Please feel free to contact me directly through my e-mail address. Thanks! Clarkie

Name:

Clarkie

Email:

kate_c73@hotmail.com

Date:

2/3/2002

Comment

This is my first entry and I've been reading this site only recently. I am 27 am went undiagnosed with vulvar vestibulitis for about 10 years and was unable to have intercourse at all until Nov.2001! I am a patient of Dr. Elizabeth Stewart and am currently on 120 mgs. of Elavil daily, Estrace once a day and doing ongoing biofeedback/physical therapy with Raquel Perlis in Wellsley, MA. The work I've done with Raquel has been the most encouraging and I have been lucky to see improvement and less pain.

I have found the information shared here helpful and I am going to look into Active Release Technique and Acupunture due to nagging lower back issues and a slight scoliosis issue.

I am curious if there are some folks still attending a support group in the Boston area. I thought I read something about a group in Somerville. Please feel free to contact me directly through my e-mail address. Thanks! Clarkie

Name:

Donna

Email:

Date:

2/3/2002

Comment

Has anyone participated in a botox study for v v. I haveread that this is now being used, I was wondering if itis helping suffers of this syndrome. I would appreciateany insights into this treatment.

Thanks.

Name:

Jo Davies

Email:

joannekdavies@yahoo.com

Date:

2/3/2002

Comment

Support groupHi everyone. I'm 26, living in South west England and have had Vulvar Vestibulitus for 3 years. I am currently setting up a support group for sufferers in the South West of England and would be interested to hear from anyone who is in this area and has VV or any similar illness who would like to become involved. I have set up an online support group which you can join at vvsupport-subscribe@yahoogroups.com or if you prefer you can email me at the address above. Vulvar Vestibulitus can be painful, imposing and extremely emotive and I feel that just being able to get emotional support can be very useful.

Name:

Donna

Email:

Date:

2/5/2002

Comment

To Jan:

Hi! I was wondering how you are feeling and if you havemade progress. Haven't seen a post from you in months.The suggests you provided me from Dr. Fowler have helpedme and I was wondering if you were still seeing him andfollowing his treatment regime?

If you are still a reader, please respond. I hope you arefeeling well.

Name:

goldilox

Email:

goldilox2677@yahoo.com

Date:

2/5/2002

Comment

I am 25 years old and I suffered with Vestibulitis/Vulvodynia for almost two years right after I got married. Being newly married at 21 years old and having this disorder is very discouraging. I wondered why God was doing this to me. I wondered if maybe I was being punished for having premarital sex with my then current husband and not waiting until we were married. I went through all kinds of scenarios trying to figure out what exactly had caused this awful disorder. Concentrating on the VV, I failed to notice my depression and my exhaustion as well. I decided to go see Dr.'s Jennifer and Laura Berman at the Boston University Medical Center which was almost 14 hours of driving time for me and my husband from Ohio. Over a two day visit to their clinic, going through many tests, Jennifer and Laura sent me home with a pill prescription, a cream prescription, and even a prescription to order a vibrator! After 3 months of doing exactly what they told me, I was pain free and I still am.

From October 1998 to January 1999 I followed the prescriptions and had absolutely no penetration in my vaginal area during that time. Earlier I mentioned that I hadn't noticed my depression and exhaustion until now that the pain was gone that "I thought" was the reason for the others. I was wrong. My marriage was the problem, not me. Since I wasn't happy in the marriage to begin with, my mental state may have caused my physical state (meaning the VV). After I left my husband, I moved to another state, met a new guy, and I have NEVER had another problem with VV (thank God). I'm not saying that all of you out there have the same thing going on AT ALL. I'm simply making sure with those who aren't confident with your lifestyles that you look at those aspects as well. If I can help even one of you out there, this will have been worth writing about. For those interested, Dr. Jennifer Berman and Dr. Laura Berman have a book out called "For Women Only" about overcoming sexual dysfunction. It is a great book to have if, like me, have suffered or do suffer from any type of sexual dysfunction.

Name:

Email:

Date:

2/6/2002

Comment

to Shawn & Mike in Seattle:I live in the area and I am under the treatment of Dr.Eschenbach at UW as well. He is great and I always feel like there is a glimmer of hope after I leave him. You also might want to see Carol Verga a nurse at Evergreen Womens Clinic in Kirkland. Dr.Eschenbach is the best, but he is very busy. Good Luck

Name:

nichola

Email:

cornelis.sgroot@ntlworld.com

Date:

2/6/2002

Comment

hi im not sure if im suffering with vestibulitis, ive had the cotton swab test and it stung when it touched the vestuble area ive been given a steriod cream its helping its not as burning as before. this all started about 7 months ago when i took antibiotics for a virus, then i got a very bad yeast infection that lasted 6 months, finally was told after several anti fungle treatments it had gone, but the problem was i still had the burning feeling, and frequent urination, i dont know how this affects my bladder if its the skin thats damaged and is causing the nerves down troubled ive know idea, im hoping its not ic, because this all started with a yeast infection, im wondering what else can cause these simptoms ive not got a uti, ive had all the tests done, does any one else have urinary probs with this please e mail me, i give all my best wishers to everyone with this i know how you are feeling

Name:

nicky

Email:

cornelis.sgroot@ntl world.com

Date:

2/6/2002

Comment

hi my name is nichola, im in the uk, here's some history.. well this all started about 7 months ago, i has thid terrable yeast infection that wouldnt go away, the same time i started with the yeast infection i had a increased urge to urinate requantly, and urgently, the doc sais it was the imflamation on the urinary opening, or something like that, anyway the yeast infection has now gone, but ive still got the burning feelings and the pain, and the frequancy, at my last visit to my gyn he told me i have a skin condition and im using the steriod cream for thid the burning as improved, but not the urinary prob, im very confused i wish someone could tell me whats going on down there, i dont think it is ic becouse i dont have to get up in the night, im wondering if the nerves down there are damaged causing these feelings, does anyone else have the same trouble, please e mail me id love to here from you

Name:

Email:

Date:

2/7/2002

Comment

to Nicky:Urinary problems are not uncommon with this condition. If you search in the old archives you will see that. I have had terrible pain with urination after intercourse that comes and goes. As a matter of fact I was tested for herpes, which I didn't have. Many women are incorrectly diagnosed because it is still a mystery. Hopefully some more people will tell you their stories, you are not alone!

Name:

Jan

Email:

Date:

2/9/2002

Comment

Donna, Sorry I haven't posted lately. I recently saw Dr. Fowler andhe admonished me for still washing my hair in the shower. He examined me for yeast and said I don't have any. I started washing myhair in the sink again. I have developed a case of burning tongue over the last 6 months and so I went to see Dr. Yiannias, a Dermatologist, at Mayo Clinic. He has talked to Dr. Fowler about Vulvodynia. Dr. Yiannias is evenmore strict than Dr. Fowler. Here is what he recommends for Vulvodynia:-use only Aveeno Dry Skin Soap or Oilatum Soap-use Free & Clear Shampoo and Conditioner-use only vanicream for dry skin or vanicream lite as a face moisturizerand do not apply to vulva-use Vanicream Sunscreen #15 or Solbar Zinc as a sunscreen-use Cheer Free, All Free & Clear or Arm & Hammer Unsented detergents-no fabric softener sheets in dryer-no deodorants (except fragrance free antiperspirant, ie: Certain Dri)-no perfume or cologne-no soap to the groin/bottom. no washcloth, use fingers only. For more than one cleansing a day, use white cotton balls soaked in lukewarm water. Here is what he recommends for burning tongue:-Plain Peelu toothpaste, brush gently.-Soft foods only, no crunchy foods (ie: popcorn, pretzels, chips or nuts) and no raw firm veggies (ie: carrot or apple)-no extremely salty foods, spicy, hot or acid food-no peppermint, spearmint or cinnamon candy, gum, mouthwash or mints-NO CHOCOLATE OR CARBONATED BEVERAGES (yikes!)-use vaseline only on lips-sip water often (atleast once per hour while awake) Since using Peelu toothpaste and avoiding chocolate and cokes, myburning tongue has improved. The Vulvodynia still flares especially ifunder stress but I have had some good weeks. Dr Yiannias did several blood tests but they all came back negative (including herpes). He hasrecommended that I get an allergy patch test which I plan to do even though I've never had allergies before. They put 150 patches on your back and check for a reaction after 3 days. Then they check again the next day and two days later. During that period, you cannot get any water on your back. That's about it! Hang in there, Donna!

Name:

dara

Email:

daramerin@hotmail.com

Date:

2/9/2002

Comment

Hi, Has anybody out there had any success with doctors on the San Francisco Bay Area? I live in Oakland, and am sure I have Vulvodynia even though I have not been diagnosed by a doctor. The symptoms all fit and I have had it for over a year, mistaking my pain and itching for yeast infections and herpes outbreaks. I currently don;t have a gynecologist I trust and am desperate for a recommendation. My best friend had it and is cured, but here awesome doctor moved out of state. She has a biofeedback source, which I will try, but I think I ought to see a doctor first. Please contact me with any names or referrals. I am desperate! Thanks!

Name:

Email:

Date:

2/10/2002

Comment

dara: Take the flight to Phoenix and see Dr Davis! He will help you, and you are not that far!

Name:

Donna

Email:

Date:

2/10/2002

Comment

To Jan:Hi Jan, I am really glad that you posted. I truly appreciateall the info you posted. I have been to 2 stores this morningin search of the products you listed. I will check Ultathis afternoon and see if I can purchase some of them. I willbegin using them ASAP.

I read an article in Prevention in the fall probably Sept.2001 and a reader wrote in about burning tongue, she mentioned a specific medication that she was on, soundedlike an anitdepressant to me, but I don't know. If I find the specific article I will post the name of the drug. Of course,you are handling this the proper way, by eliminating thecause of the problem, irritants.

I will also explore having allergy testing done. I was thinkingabout this the last 2 weeks. Now your info confirms thatI should have this done.

Thanks once again, and I am happy that you are findingsolutions to your concerns. Best of Health.

Donna.

Name:

Nini

Email:

Date:

2/10/2002

Comment

TO CLARKIE: yes, there is a support group in Somerville. It is an NVA support group. I would encourage you to contact the NVA at nva.org and join them. You will get a quarterly newsletter that is quite informative. You also get to attend the local support group in Somerville. You can email the group leader at kpvandell@erols.com. She also has a wealth of info to share and will give oyu more info on when and where the group meets.Nini

Name:

Diana

Email:

Date:

2/11/2002

Comment

I live in the Tacoma Wa area and I also saw Dr Eschenbach. I am glad he has been able to help those of you who mentioned him but he did absolutely nothing for me. I too felt at first that he offered me my first glimpse of hope but was disappointed in the end. If any one in the area can offer the name of other medical personnel who can help I would really appreciate it. Thanks.

Name:

candice

Email:

Date:

2/11/2002

Comment

I am 21 and have been suffering from vestubulitis for two years now. Im not sure how is began but I did have a chlamydia infection which I was treated for and then a laparoscopy to check for pelvic inflammatory disease. After these procedures my symptoms began. I am trying antidepressants and various creams but nothing seems to work. Am now seriously considering surgery. i have heard that the flsh-lampdye laser treatment can work for some people because it destroys the blood vessels and/or those nerve endings around them . has ant one tried this yet? what was the outcome and did you have permanent or only temporary relief. Thanking you all in advance.

Name:

Christine

Email:

Date:

2/11/2002

Comment

To Laurel:

Would you please give us an update on your progress with Dr. Davis?

Thanks.

Name:

sarah smith

Email:

princess_sysc@hotmail.com

Date:

2/11/2002

Comment

I got Vuluar vestibulitis whenI was 16 now I am 18 and hate it Does anyone hoe hard that diet is and the pain I wish there was a magial cure

Name:

Lisa

Email:

w8sovr@aol.com

Date:

2/13/2002

Comment

I live in CT and am looking for referrals in this area. Can anyone provide recommendations? Thanks.

Name:

Lisa

Email:

w8sovr@aol.com

Date:

2/13/2002

Comment

I live in CT and am looking for referrals in this area. Can anyone provide recommendations? Thanks.

Name:

Frank B.

Email:

Date:

2/13/2002

Comment

To Lisa in CT: I have been reading and posting here since guestbook 13. My wife has been to Dr. Benson Horowitz the Expert on Vulvodynia here in CT., although she was not willing to undergo his treatment that does not mean you will have the same experience. She saw him a year ago and at that time he said she had a yeast infection although nothing was visible to the eye, he also wanted her to take Elivil. Maybe there is some new treatment available. Please post your results after seeing someone for help. Your experience may help others. Best of luck.

Name:

Karen

Email:

Date:

2/13/2002

Comment

It's been a long time since I posted, but thought things here merited an update. My daughter, 28 years old now, has had vvs on and off since she was 20. Her most recent bout has lasted two years. But we were so lucky to be reading this list when Jennifer posted her persausive argument that, for some sufferers, there might be a bacterial explanation. My daughter's relapse coincided with a new sexual partner and there were other reasons why this made sense for her. On Jennifer's recommendation we flew from California to New York to see Dr. Toth, whose lab found traces of chlamydia. (I need to stress here that both she and her partner had been tested multiple times in other labs for chlamydia and it was not found. The chlamydia Dr. Toth found was subclinical.) But she did respond to treatment of it. She improved somewhat on an oral antibiotic, then underwent his IV treatment, which was not pleasant, but the improvement has been dramatic. She is not quite 100 percent pain free, but her flare-ups are infrequent, and not too bad when they do occur. Plus they seem to be still decreasing so that a 100 percent response may yet be possible. I know this will not work for everyone, but for some it may be the answer.

Name:

Miso

Email:

kca984c@tninet.se

Date:

2/14/2002

Comment

I was diagnosed with vestibulitis, urethritis, cervicitis and interstitial cystitis at the same time after 1 year of incredible suffering. It started as urethritis and spread slowly...Doctors tried to convince me that it wasnt an infection and just gave me massive amounts of painkillers like morphine and also tried to talk me into taking antidepressants, but I had seen big improvement with cephalosporine antibiotics. So I left the hospital after numerous worthless tests all focused on other causes than infection. Got the antibiotics myself (longterm treatment) and after three weeks the healing started. Immense itch (like a wound healing) in the vestibular glands and urethra and over the bladder area. My hurting swollen abdomen also went back to normal. Allergies, joint aches disappered. So by my own experience I KNOW that vestibulitis can be caused by infection which cannot be proven in routine testing!So dont listen to your doctors they dont know s..t. (most of them at least), listen to your own instinct.Do you know that in the 18th century the doctors thought the female uterus was linked to hysteria and treated psychological disease by doing hysterectomy (hereby the name). The misconception that disorders/pain in the female urogenital area is linked to psychosomatic disorders apparently still lingers in the heads of the demi-gods of our time - the doctors. If I had listened to my doctors I wouldnt be alive today...

Name:

Kelley

Email:

KPYarbrough@yahoo.com

Date:

2/14/2002

Comment

I wept as I read as many letters as time would allow. My 63 year old mother was diagnosed about 3 1/2 years ago w/ Vulvodynia. I am just now fully understanding how she has suffered. She has no support group, the family's patience is "running out" and she is losing her will to live. She lives between the sofa and the GYN office with a once every 3 month visit to the psychiatrist to renew her Clonopin prescription. Help! Is there a support group in Columbia, South Carolina that I can tell her about? She is completely isolated and I'm 3,000 miles away from her. Good luck and God Bless to everyone associated with this horrible affliction.

Name:

Tamira

Email:

sunahgirl@aol.com

Date:

2/16/2002

Comment

I have had vulvar pain as long as I can remember. My gynecologist said I have vulvodynia because of scar tissue. My mom sexually abused me as a child and would cut my genitals and in my vagina with a knife. I have no inner labia and most of my genitals is scar tissue. I am in biofeedback to help me calm down my muscles and to maybe stretch my vagina to permit entry. My pain levels are definitely down and hope it continues to work.

Name:

D.

Email:

Date:

2/16/2002

Comment

Tamira,

I am so sad to hear about your story. Please return to this site whenever you need someone to speak with. My thoughts will be with you forever, and I really hope that you will have a speedy recovery! Best of luck. Do you have good, sympathetic doctors? Write more if you need more answers.

Name:

Lyn Brewer

Email:

fuzey@earthlink.net

Date:

2/17/2002

Comment

I have just been diagnosed with Vulvodynia. I am finding it very difficult to cope with the pain and still have a "normal" life. I found the information contained in this website very helpful in my research efforts. Thank you.

Name:

Leah

Email:

Date:

2/17/2002

Comment

Karen, I am glad to hear your daughter is getting better. Could you describe a bit about her symptoms so we could know if her situation is similar to others? Also, someone recommended a visit to Dr. Davis. But she said her symptoms included lots of discharge. I have none...just burning, irritated feeling, no redness or anything else. Can you let me know if you think he could help me in this case?

Name:

nicola castle

Email:

kartik69@hotmail.com

Date:

2/18/2002

Comment

im from new zealandand no one will help me because its very rare here not even the hospital.PLEASE HELP MEANY ONE OUT THEIR PLEASE EMAIL ME BECAUSE IM ALONE.AND IM GETTING SO ILL WITH THE PAIN IM ON OXYGINEVERY WEEK BECAUSE ITS TYING MY BODY OUT.SO IF YOU HAVE IT REALY BAD EMAIL BECAUSE I WOULD LIKE TO TALK TO SOME ONE.

.20 years old and because of vulodynia im addicted to pain killers and my life is a mess.i started having vulvodynia symptons 2 years ago.the symptons were very bad pain in my vagina hole and in my clitorus also uretha also i had very bad derpression and low sex drive. the pain i had two years ago wasin't all the time and now it is every minute of every day.

Name:

Anoymous

Email:

Kartik69hotmail.com

Date:

2/18/2002

Comment

To anyone who has serious pain and have run out of all alternatives for pain relief. My partner has tryed everything including 13 codine prescribed daily, 24hr hot water bottle, 11/10 for pain and all of the above does NOT work. So by chance we went out and she tryed SPEED or Methamphetamines and seem to relief a hell lot more than codine. I don't recommend it but when your in that much pain What the hell can you take? It works on the central nervous system which Ephedrine stimulates, inwhich vulvodynia is a nervous related disorder. Good luck hope for the best and hope anyone in the medical profession will research this illegal but forgiving pain relief medicine..

Name:

Anoymous

Email:

Kartik69hotmail.com

Date:

2/18/2002

Comment

To anyone who has serious pain and have run out of all alternatives for pain relief. My partner has tryed everything including 13 codine prescribed daily, 24hr hot water bottle, 11/10 for pain and all of the above does NOT work. So by chance we went out and she tryed SPEED or Methamphetamines and seem to relief a hell lot more than codine. I don't recommend it but when your in that much pain What the hell can you take? It works on the central nervous system which Ephedrine stimulates, inwhich vulvodynia is a nervous related disorder. Good luck hope for the best and hope anyone in the medical profession will research this illegal but forgiving pain relief medicine..

Name:

M.

Email:

Date:

2/18/2002

Comment

To MISO:

Thanks for sharing your information.

It would really be helpful to some of us here if you would be more specific about your symptoms and treatment. Many of us have had the same diagnosis as you, but specificly, what were your symptoms?

How did you get the antibiotics if you always tested negative for things?

There are quite a number of different cephalosporin antibiotics, which one did you take?

You said longterm, exactly how long? What strength dosage? Was it pills or liquid?

I would like to tell my doctor about your cure, but I don't have enough information. Please post again. This information may be really helpful.

Thanks - M.

Name:

ann

Email:

amwolk@hotmail.com

Date:

2/19/2002

Comment

hi, i have recently gone off of the antidepressants that i have been taking for a year. i have gained about 15 pounds since i went on them and now that i am off i am hoping to lose the weight. does anyone have any suggestions. does the weight just come off naturally? i exericse 4 days a week. if anyone has any comments please email me directly. thanks, ann

Name:

Diane

Email:

yteews01@hotmail.com

Date:

2/19/2002

Comment

To Ann: I took Amytriptyline (Elavil) for about a year. I took 100mg a day. No luck for me either. I took myself off of it twice. The first time my husband felt that I was worse. I wasn't, but my mental attitude was. I went back on it just to see if I was right that it wasn't helping. It wasn't. Both times when I stopped I would get the feeling of an upset stomach. The first time it lasted about 3 weeks. The second time it seemed only a few days. It also made me constipated, especially in the beginning. I have not been taking it for over 6 months and other than this blasted condition, I feel fine. I have heard that stopping cold turkey is not recommended though.

Name:

Diane

Email:

yteews01@hotmail.com

Date:

2/19/2002

Comment

Has anyone ever wondered if it's possible that we could have some sort of infected or clogged glands? I have heard of this for some people. If so do you know if this could cause swelling or reduce our daily, regular, normal discharge. I have the pain around the vaginal opening, which I think is nerve or tissue damage, but I don't understand this "overall" swelling of my entire genital area. Any ideas?

Name:

Paula G. Anderson

Email:

pgandy@starpower.net

Date:

2/20/2002

Comment

I've been diagnosed with displaysia in the vulvo area and want to know more about it.

Name:

Sue

Email:

Date:

2/20/2002

Comment

Hi ladies: I only took 10 mgs. of Elavil for 10 days and I also felt like a zombie on it. It's a wonder I didn't get in a car accident while on it. It didn't relieve any pain either. Drs. act like Elavil is the wonder drug!!!! I also didn't need to gain weight from it. Even though I only took it for a short time, I had terrible anxiety when I stopped it suddenly. I've always been extremely sensitive to meds. though.

Name:

Donna

Email:

Date:

2/21/2002

Comment

Dear Laurel and Lynn:

Where are you guys? I hope that you are both feeling well,but I miss reading your informative updates. Lynn howdid your appt with Dr. Davis go? I hope well. Laurel howare you feeling? When I read the guestbook and don't seeyour updates, the guestbook seems to lack the personal touch that it once had. Hope you are doing well andbest of health to all.

Name:

laurel

Email:

Date:

2/21/2002

Comment

Hi guys and girls!! I have not written because I have not wanted to take up space for those who have so much trouble loading, not to mention the woman who complained about us. I, too, miss the "crew." There really isnt much to report, but I will let you know after my 3rd appt with Dr Davis on March 27. I am continuing to improve, albeit slowly. The best thing I ever did was travel across the country to see him, a chance that seems to be paying off. I hope that you all are improving as well. I do read the posts, so keep in touch. Thanks for asking about me. Talk to you in the near future, laurel

Name:

D.

Email:

Date:

2/22/2002

Comment

Hello everybody. I just wanted to keep you posted with how I am feeling. I would like to say that a year and a half ago my condition was so bad, that I could barely sit down. On a scale of 1 to 10, my burning was a 12! I had to leave my university and move back in with my parents. But, after a real struggle, I am feeling MUCH MUCH better. I had to go through many different meds before any began to work for me. It took me a year to find one that would ( I had Dr. Stewart help me). Then, this summer I SLOWLY began to have some "good days." When I moved back to Boston, I began seeing Dr. Brady, a chiropractor who does the Active Release Therapy I have wrote about in the past. This really quickened the speed of my recovery. But this december I went to see 3 doctors I had put off seeing for a year: Dr. Ledger(212.746.3009), Dr. Monica Peacocke(646.672.0528), and Dr. Glazer. Dr. Ledger tested me for the gene that many women have who are suffering with this condition. Over 50% of women with v.v. have this gene. If you do have this gene, he can give you a supplement to correct the imbalance that this gene generates(having the gene means that your body has a very difficult time quelling any inflammation in your body). I did not have this gene, but it was so exciting to hear that he can help so many women who do. EVERYONE should go to see him in NY Weil Cornell Medical Center (part of NY Presbitarian Hospital). He is the director of the best gyn. department in the world--go seek him out! he has had amazing results with his supplement. And women who have the gene respond pretty quickly to his therapy.

Then, I saw Dr. Monica Peacocke, who really changed my life. I beleive that my burning is from tissue damage and nerve pain. But she put me on two weeks of TEQUIN anti-biotic, and diflucan (100mg) once a day so that I would not get a yeast infection. She believes (she is a dermatologist who specializes in vulvodynia and vulvovaginal diseases) that my vulva is inflamed because there is an imbalence between the good and bad bacteria, which resulted from numerous anti-biotics and yeast creams I have used. She also thinks that, because of this, I am too dry, my body does not produce any discharge, and that my estrogen levels are too low. After the 2 week course of Tequin, she put me on boric acid capsules, which work to make my vulva produce more discharge and to correct the PH balance in that area. I never beleived her when I first started, because I knew I did not have an infection. However, I have improved so much over the last 2 months, both my boyfriend and I cannot beleive it. I still cannot have sex yet, and I am working with dr Glazer with his biofeedback therapy (he is a wonderful man). But, my pain and burning that I felt every second of every day has greatly improved. If I still am not "perfect" in a couple of months, she might put me on estrogen in the form of a pill that I would insert into the vulva. She says that she has a 100% success rate with women who have my history. I am very apprehensive about any doctor promising such great results. Beleive me, when she said this I thought she was crazy---But I really have been helped by it.She sees, if I remember correctly, over 100 vv patients a year.

I just want to tell all of you that last year at this time I thought I would be in this pain for my entire life. At that point, nothing was working and I was at times suicidal. I felt that I had poison ivy inside my vulva--the burning was so horrendous. I always dreamed about returning to this site to tell you that I had improved. If I can get better---everyone can. You must be very aggresive in tracking down doctors and different therapies. But the hard work is paying off!

Sorry I wrote so much. Good luck to everyone. There is a lot of hope out there for everyone.

Name:

Jeanne

Email:

jeanne_ellen@yahoo.com

Date:

2/22/2002

Comment

Hello D-Do you think Dr. Brady and the doctors in NYC would be helpful for interstitial cystitis as well as vulvodynia. My vulvodynia is in control with the low oxylate diet, but the IC (urinary frequency) is still a big problem. What do you think?Thanks!Jeanne

Name:

D.

Email:

Date:

2/22/2002

Comment

Jeanne,

I spoke with an Active Release Therapist in Boston when I was shopping around for a good chiropractor. He said he had never worked with anyone who had vv, but that he had helped a woman who had IC. Do you live in Boston? I could e mail you his info. dr. Stewart also put me on a med. called ELMIRON. It is given to women with IC, because it quells the amount of toxins and irritants that the mast cells give off in the tissue of women who have IC. However, the same reaction is occuring in the tissue of women who have vulvodynia, and so she has been trying this with some of her patients. I think we all think it is helping somewhat. If you don't like in Boston, maybe your doctor could speak with Stewart. I think both doctors in NY could be of some help since, from what I hear, the urinary constancy occurrs because of the inflammed tissue. Is this correct? Hope this helps.

Name:

Jeanne

Email:

jeanne_ellen@yahoo.com

Date:

2/23/2002

Comment

D-Yes, I live just north of Boston and would love the name of the chiropractor with IC experience. My e-mail is listed above if you could send it to me. I've been on Elmiron for over 3 years and it's been a real life saver. I've also seen Dr. Stewart and see her associate Dr. Samaha for my routine gyn stuff. I go down to NYC for my urologist, so like you, I really research my options! Let's touch base soon!Best,Jeannejeanne_ellen@yahoo.com

Name:

Email:

Date:

2/24/2002

Comment

Frank, I am presently using emu oil purchased from Wild Rose Ranch. It is helping me tremendously. I tear also. I purchased some from a place in Texas, but it had a strong odor and was afraid to use it. What I am using now has no odor. It may help your wife. My skin is healing. Wanted to share that with you. I am the person who had pre-cancer cells on the inner vulva area. The Aldara cured that. My skin is still not back to normal, because of the damage from the pre-cancer cells, allergic reactions to foods, condoms, and lubrications. I don't tear near as often, it heals quickly thanks to the emu oil. Clover said it would take a few months to heal. My husband can touch me in that area now. Things are really much better.

Name:

Frank B.

Email:

Date:

2/24/2002

Comment

Thankyou for taking the time to pass on this information. My wife seems to do alright if we avoid positions where I am behind. I think that places the most pressure on the site that tears. I still wish we could find out what exactly has changed to cause the area to weaken. Hormone levels seem to be normal and nothing else has been suggested. Best of luck with your recovery and thank you again. I read the site every day and hope for answers. Someday..............

Name:

Marie Mock

Email:

MMock47334@aol.com

Date:

2/25/2002

Comment

I have had vulvar vestibulitis for the last 6 yrs. After living with this agonizing condition for 5 yrs., I went on the low oxalate diet. It has given me some relief. Things are not perfect but better. I do notice a difference if I go back on a regular diet so I am convinced that oxalates are a contributing factor. Calcium citrate is also recommended to help to lower oxalates. Unfortunatly, I was not able to tolerate taking the 5 tablets recommended. I also use emu oil. I can only use it a few times a week, if I use it more frequently I have burning. I'm going to continue with this oil, I think if I can develop a tolerance I will improve.

It's great to be able to exchange information. Thanks for sharing.

Name:

Donna

Email:

Date:

2/25/2002

Comment

Hello:

I have been diagnosed with atopic dermatitis and have been prescribed several cortisone creams that all seem to burnmy skin when applied.

Has anyone used a cortisone cream that does not burn yourskin, if so please post the brand name and I will see if I can get a prescription for it.

Thanks for your help.

Name:

carol mazick

Email:

clmazick@cox.net

Date:

2/25/2002

Comment

Have been treated with vagifem for vaginal problems...i can take estrogen orally because of blood clot to lung...doctor has prescribed this for vaginal dryness and the discomfort i am experiencing in vulva...so far i am not pleased with this..advice on what to do --- sounds like my symptoms are near to what is being written here on this web site...

Name:

D.

Email:

Date:

2/25/2002

Comment

Dear Jeanne,I tried to email you at the address you listed, but it was returned to me. Here is the info I promised. Good luck!

Below is the number and address of the Active Release Therapist. If you want, I will also provide you with the man I see, who, although he has never worked with women who have this problem, intellectually he is very good atunderstanding the problems behind our inflammation. Both are excellent.Dr. Gregory Gorman581 Boylston St. suite 805Boston, MA 02116617.421.1881.

Name:

Jennifer Brown

Email:

biaggeo4u@yahoo.com

Date:

2/25/2002

Comment

i live in the Portland,Or 97045 is if i have "Vulvodyia" is there a Doctor in my area

Please reply

Name:

Email:

ifried@aol.com

Date:

2/26/2002

Comment

DonnaI have a fabulous pharmacy in Ridgewood NJ Called Town and Country. John Herr, the compounding pharmacist made me a great 5% cortisone cream without any harsch ingredients. I too found the commercial preparations burned. They ship all over the country and compound lots of new and innovative medicines for women with Vulvadynia. They are my saviors!!

Name:

Donna

Email:

Date:

2/27/2002

Comment

To ifried:

Thanks for replying to me. I will check this out and see if I can get a 5% cortisone without all of the ingredients thatburn.Thanks for caring to reply I greatly appreciate it.

Name:

Alexa

Email:

Date:

2/27/2002

Comment

I would like to know if anyone could recommend a doctor in New Jeresy that speciali

Name:

Diana

Email:

Date:

2/27/2002

Comment

Jennifer,I have heard good things about OSHU in Portland. I am sending you the information. Jeffrey T. Jensen, MD, MPH Department of Obstetrics and Gynecology, Oregon Health Sciences University 3181 SW Sam Jackson Park Road Portland, OR 97201 PH: (503) 494-1700 FX: (503) 494-4479 E-mail: jensenje@ohsu.edu Website: http://www.ohsu.edu Specialist in Vestibulitis, Vulvodynia, Vulvar Dermatoses, Vesiculo-bullous Diseases, Bartholin Adenitis, Levator Myalgia, Vaginismus, Myofascial trigger points, neurogenic pain, chronic candida, human papilloma virus, introital stenosis, posterior labial commissure band, post-traumatic scarring.

Jillian Romm, RN, MSW Vulvar Pain Clinic, Oregon Health Sciences University 3181 SW Jackson Park Road Portland, OR 97201 PH: (503) 494-4042 FX: (503) 494-4473 E-mail: rommj@ohsu.edu Specialist in Vulvar Pain, vaginal pain and vaginismus. Sexual and relationship concerns related to vulvar pain conditions.

Name:

Mary Ann

Email:

mdlowry@dock.net

Date:

2/27/2002

Comment

Anyone in the greater Los Angeles area is invited to the next local vulvodynia support group meeting on Sunday, March 10th. If you are interested in more details please contact me via e-mail.

Name:

queenheather02

Email:

queenheather02@yahoo.com

Date:

2/27/2002

Comment

Name:

barbara ledogar

Email:

bl853@hotmail.com

Date:

2/27/2002

Comment

Dr. Glazer,My mother is 81 years old and has been suffering for 2 years with terrible burning of the vulva . Especially at nite, she is so swollen that she has to lie down to get relief. She has been to numerous gynocologists, dermotolgists, etc... and has found no relief whatsoever. After reading some of the symptoms in the articles, it seems to me that she has this disorder. Can you tell me what she can do do help herself. I cannot stand to see her like this. The doctors say that she just has to live with this condition. She has a zip lock bag full of medications that has been given to her over the past 2 years and not one thing has helped her. Thank you for taking the time to read this.I hope to hear from you soonMrs. Ledogar

Name:

DMS

Email:

Date:

2/28/2002

Comment

Has anyone been diagnosed with vulvar vestibulitis? I think this is what I may have though this is not what I've been diagnosed with yet. I have pain on the skin like in the shape of a "U" that surrounds the bottom of my vagina to slightly inside. I get very sore there when I sit. Sitting sets everything off. I can now tolerate intercourse. I've been on biofeedback and estrgen cream. The actual intercourse does not hurt, but the next day, forget it. I am really sore there and inflammed. To test me it doesn't really hurt to pock with the Q-tip but there is always a soreness afterwards that kills me. I have spots in this area that I am speaking of that get very red if you touch them (eurythmya) but the spot don't stay red. I do get an overall swelling and reddness after intercourse. I've been told I have Atrophic Vaginitis (thinning of the walls) but I think that these spots may need to be cut out. Of course no doctor wants to do this right away. It's the last resort, which I understand, but if I got through many more years of this (almost 2 so far) and find out that surgery is the answer, I will have hated to have wasted all this time and useless attempts at getting better along the way. Has anyone had this surgery or been diagnosed with this that can tell me their symptoms or results, etc? Thanks. Sorry so long.

Name:

M

Email:

Date:

2/28/2002

Comment

This is to D. Thanks for all your info about Dr. Peacock and everything. I too am seeing Dr. Glazer. I was tld about Dr. Peacock but ended up seeing a different doctor. I will give her a try first but now I wish I went to Dr. Peacock. 100% success! Right now I feel I could be her first failure! Could you tell me where she is located? Is she near Dr. Glazer? Your info was not too long for me. I think it gave at least some of us some hope. I do feel like this is a loosing battle though. Did she do tests or cultures on you?

Name:

Alexa

Email:

Date:

2/28/2002

Comment

I am wondering if anyone could recommend a doctor in New Jersey who specializes in vulvodynia. I was diagnosed with this a few months ago and am going crazy.... suicidal too. can anyone help............ I am desperate.... Thanks.

Name:

M.

Email:

Date:

3/1/2002

Comment

To DMS:

I have the exact symptoms as you do. If you look back over guestbook 17, you will find others as well. Insist that your doctor use a pap smear on the inflamed area, NOT your cervix, and have them do a hybridinization for HPV. Many women seem to have this virus externally, which gives them that red "horseshoe", and get relief when they treat the area with Aldara.

Good Luck.

Name:

Leah

Email:

Date:

3/1/2002

Comment

A question for D...I checked on a web site for an ACT chiropractor...found one and checked him out. He was basically horrible. And unfortunately he is the only one in my area. So that was a bust. I was curious if you think Dr. Peacock or Dr. Legder could help me if I do not have any visible reddness or inflamation. I only seem to have some burning and irritation around the opening of the vaginal area. I live in Colorado, so a trip to see either of them would be a big deal. Dr. Davis has also been recommended. I still wonder if I would have anything to gain if I do not have any redness, discharge, or swelling. Does anyone have any feedback?

Name:

D.

Email:

Date:

3/1/2002

Comment

Leah,

This is my advice. Dr. Ledger is super good at responding to his emails, so I suggest you write him and ask. I think that even though you have little visible redness or discharge that these doctors could still help. I, too, had little redness and I had no discharge to speak of (that was part of my problem Peacocke said since I was way too dry). And I am almost positive that you could still be a candidate for the gene, but please ask Ledger himself at (wjledger@med.cornell.edu). Also, I am sure Peacocke would speak to you if you gave her a call. That is what persuaded me to go down there to see her. Good Luck!

Name:

Email:

Date:

3/1/2002

Comment

I saw your post about Dr. Peacock and wanted to caution you about her. I too went to see her and she made me sooo much worse. She is a "rubber stamp" dr. She treats everyone with the same exact thing---she tells you that you have a yeast and bacterial infection, wheather you do or not!! I had neither and she kept getting negative cultures and kept feeding me Diflucan and antibiotics and that is what started my horrible inflammation of my vestibular glands. I have spoken with several of her past patients in my support and they all credit her with making them much worse--all were overtreated for non-exsitant yeast and bacteria. She has one protecol no matter what your problem is. And, she has no diagnostic capability. You have been warned!

Name:

B.

Email:

Date:

3/1/2002

Comment

I was diagnosed with vulvodynia back in Jan.you women that have been diagnosed with Atrophic Vaginitis. I was wanting to know are you really red and sore just before you start your monthly period? that's when my redness and I get really sore just around the outside of my vagina and in around the vestibule and down from the clitoris.I do'nt know what to believe in these doctors about our conditions.I do fill alot better since I was put on Elavil and I been trying the oxalate diet.Thanks for this site.I reads everyones stories every night.

Name:

Christine

Email:

Date:

3/1/2002

Comment

Hi everyone -

It's been a while since I posted anything here, and I'm afraid that I have no new news. However; I have decided to make the trek out to Arizona (I'm on the east coast) to see Dr. Davis. This is going to be a major endeavor for me. My family is pitching in to help pay for the trip. With the airfare, hotel, car rental, and his fees (he doesn't take my insurance), this could have been a fabulous vacation to just about anywhere in Europe these days, but, sadly, it has to be Arizona.

I did speak with him on the phone, and I feel hopeful about the trip. I'll keep everyone posted.

Thanks to those who posted about Dr. Peacocke's "rubber-stamp" treatment. For a moment I thought, "why am I going to Arizona when I could drive to New York?" It's easy to get sucked into things that sound too good to be true.

Hi to Becky and Buttercup -- are you guys still out there??

Name:

Fran Russell

Email:

fran5562@att.net

Date:

3/1/2002

Comment

Have had IC since 1997 but was diagnosed at Mayo's in Feb. with Vulvodynia. Am a National Patient Advocate for IC and thought was well educated re: other diseases but was wrong.

Name:

Alexa

Email:

Date:

3/2/2002

Comment

Hi. I am new to this site and am glad it exists. I am 29 yrs. old and curious to know if anyone who suffers from this thinks that it is some kind of infection that is being misdiagnosed. This whole thing started when I had a vaginal infection that just never went away. It just got worse and especially when I got pregnant. Also I would like to know if anyone has discharge and what is it like? Initially I first thought that my husband gave something to me (some kind of std) but been tested from gonhoerra, clamydia, herpes, etc you name it but slides and cultures show negative. I have seen 3 doctors who told me to see a shrink which I did. She put me on zoloft that is not helping. I have another gyno appt. with a different doctor just to get one more opinion to rule out some kind of infection. If this shows negative then I am going to see a vulvodynia specialist. This devistated disorder has such a negative impact on my life. I have 3 kids and have a newborn who I am trying to enjoy. It's hard. Anyway if anyone has information I'd like to hear from you. My pain is pretty much constant but improved slightly since the birth of my baby. Well hopefully this disorder can soon be treated.................successfully.

Name:

D.

Email:

Date:

3/2/2002

Comment

I am glad for the warning about Dr. Peacocke. Yet, my mother and I (she has a milder version of what I have) have both been responding really, really well. I think people just really respond to different approaches. It is so frusterating that not all women respond to the same one!

I feel so guilty I have been writing so frequently and so I will not respond as much. I just want people to feel that some combo of therapies WILL work for you. Please don't be discouraged--You just need to find that thing that will work for you!

Name:

Heather DB

Email:

HADeBris@aol.com

Date:

3/3/2002

Comment

hi guys- my name is heather. i am 22yrs old, and i have had this condition since i was 15. like most of you, i have tried alot- from the normal prolonged yeast infection treatments to testosterone cream... obviously, i haven't had much luck.

i just started with a new primary doc, and she has promised to work with me on this, but she wanted to start off with the easy stuff <i have a few other probs besides this>.

one other problem i have is bad knees- both of them. i have had this prob since i was in grade school, and has lately gotten worse... we think it is arthritis. my doc gave me a couple samples of a arthritis medicine by the name of CELEBREX. i had 12 days worth, and would see her for a follow-up 2 weeks later.

well, it did help my knees- ALOT. but i think i may be having a weird side effect with it.

after the 3rd day of taking it, i noticed that my vulvodynia pain was less then usual- and by the 6th day, my pain was gone. my husband and i had sex for the first time in over 8 months... PAINFREE.

like i said earlier, i only had 12 sample pills, and i had 14 days until i would go back. after the 1st day of stopping the celebrex, my pain was back.

i have since started again, and i feel the pain lessening. this may be a pure coincidence- i don't know whats causing this, nor whats stopping it... i am going to do more research, and get back with you guys. I do know that Celebrex is an Anti-Inflammitory, but i'm gonna dig a little deeper.

:-)

Name:

Ericca

Email:

marmalaideus@yahoo.com

Date:

3/4/2002

Comment

I'm only 19 years old and found out about 4 months ago that I may have Vestibilitis. My OBGYN referred me to a specailist at OSHU Clinic that is just for vulva pain but I can't be seen there until the end of May. I'm pretty scared about this. I've heard so many ways to "help" and then I see people saying it doesn't "help". My boyfriend of almost two years is supportive but I don't know how long that will last. He is young too and in his "prime" and I can't do anything to satisfy him. I heard that a low oxilate diet works 70% of the time but I can't find a site that will give me rescipes so I can attempt that method. Then I'm gonna start taking Caicium Citrate which I also heard "helped". I am pretty confused and basically scared that I may not heal and when I do get to the age of wanting kids I won't be able to unless a c-section which isn't safe in my family. I also here that the depo shot may contribute to this "thing" ( I'm not sure what exactly to call it.) I have to go in, in a hour to get my next shot. I think I'm gonna talk to them about swicthing me to something else. Any suggestions??? I just found this site and I think it will help me. I've never really been into the support group idea but this time I am really scared and confused. Now, I know that I can get help here. Thank You so very much!!!!

Name:

ericca

Email:

Date:

3/4/2002

Comment

I think you should hold off on the shot. A lot of us have said it has made them worse, or was the beginning of the end for them. I suggest that you write to the vulvar pain foundation and order the low oxalate cookbook. I am sure that eventually they will put another out as well. The address is Post Office Drawer 177, 203 1/2 Main Street, Graham, NC 27253 (919-226-0704). Joanne or Rose can help you out. Good luck!

Name:

Frank B.

Email:

Date:

3/4/2002

Comment

To Errica: I'll try to be brief, you are young and while your boyfriend may seem like everything to you the most important thing is to get better. Make you, number one that's not selfish it's necessary to getting better. Stop thinking of things you can't change or that are in the future like having children. Lack of sex won't kill your boyfriend, if he is a good guy he can hang in there a while longer. I'm forty eight years old and still" in my prime". Best of luck and be patient this takes time.

Name:

Leslie

Email:

lmopps@hotmail.com

Date:

3/5/2002

Comment

I too have been diagnosed with vv. I believe that I have had it for several years now but am not sure exactly when it happened. I belive it began before I began having sex. Right now I am seeing a Dr but am unsure if we are pursueing the correct treatment. It consists of taking Diflucan one every day for thirty days, after which I return to see him and have steroid shots once a month for up to 4 months. He says he has done this and seen results in every patient. I am nervous about it though and would appreciate any info on this treatment. I would also like to hear from anyone willing to talk about this and provide emotional support. I live in Indiana- in the tri-state area- near Ohio. Please feel free to email me

Name:

Leslie

Email:

lmopps@hotmail.com

Date:

3/5/2002

Comment

I would appreciate referrals of Dr's in the Indiana area or Ohio. Thanks in advance for your help.

Name:

abs

Email:

Date:

3/5/2002

Comment

I wanted to know if anyone has received shots of steriods in the vulvar vestibular area and if so was it worth it. I have been diagnosed with v.v. for a little over 3 years now so far nothing has helped. I was hoping this might give me some relief but I am very nervous about it.

Name:

Email:

miskes@kittymail.com

Date:

3/6/2002

Comment

Ericca:

You should DEFINITELY get off the shot, I've read so many women stating their problems began with taking the depo. If you stop taking it you could have a good chance of improving.Please try some kind of non-hormonal bc at least for a year, I wouldn't be surprised if you see some great results. Getting off the pill was one of the answers for me so ofcourse I'm partial to it, but anyways... good luck!

Name:

Anne

Email:

Date:

3/6/2002

Comment

Hello All,

I have hesitated to post about my vulvadynia, because I have been suffering with it for almost 5 years now. I have tried many therapies, but I have been feeling really good lately.My good days are starting to out number my bad days. This is a HUGE breakthrough for me.

My symptoms have been burning internally and externally with no discharge or infection. I feel that foods definetely add to my burning: coffee, chocolate, lots of veggies or fruit, yogurt, lots of corn products. I try to stay away from these.

I take effexor xr 37.5 mgs twice daily, I use the hormone patch with .05 mgs oral estradiol (daily), lorazepam for 1mg for really bad days AND LOTS OF WATER!!!! I drink at least8 glasses of water everyday. I also started taking N-Acetyl Glucosamine. 1 capsule everyday. I have noticed a big difference with the glucosamine. It has taken me almost 5 years and many people praying for me to reach this point in my life. Most of my protocol is from the Vulvadynia Foundation. I cannot take the calcium, it bothers me, but the glucosamine doesn't. I try to follow the Low Oxalate Diet, but I have been able to cheat (a little) lately with no problem.

I hope that this helps someone. 5 years ago, I was desperate with pain. Keep praying and keep looking for the protocol that works best for you. You can feel better.

Name:

B

Email:

Date:

3/6/2002

Comment

Hi Anne, Thanks for sharing the things that have helped you thus far. I just started effexor xr and I'm hoping it will help. Do you think this is primarily what's helping you or just everything? What exactly is this hormone patch? How does this help? I have tried estrogen and it doesn't seem to help and I'm just nervous to be taking hormones before I've had a baby. Finally, how long have you been taking glucosamine and how do you think this helps? I think it's great that you're improving, but how can you tell what's primarily helping? I hoope you continue to feel better. Thanks!

Name:

Amber

Email:

private

Date:

3/6/2002

Comment

Dear Friends, This is my first time writing to this site but I have been reading your entries for some time now and I am happy to now that there are others out there who understanding what I am going through. I am so happy for all of you who have achieved some degree of success with various treatments. I have thus far been unsuccessful. I am 21 years old, I have just gotten married and I am finding this condition very discouraging. Your comments, however, have given me hope and I just wanted to say thanks!

Name:

Becky

Email:

bkdris@coin.heartland.com

Date:

3/6/2002

Comment

Hi! Everyone its been awhile since I posted.I've been doing really great since I posted back in Jan.I've been on Elavil and the Low oxalate diet. I have'nt had any burning and itching since back in Jan. when I was first diagnosed I'm not sure if the Elavil is helping or the low oxalate diet.I have'nt felt this good in 3 yrs. I hope everyone can find something that will work.I still get on this site every night to read everyones story. Thanks! for listening to me.

Name:

Rebecca Kyle

Email:

rebecca.kyle@tafensw.edu.au

Date:

3/6/2002

Comment

I have just completed the on-line survey. I found it difficult to answer in relation to sexual activity and relationships as i haven't been in a relationship for over 5 years due to the condition. I have attempted to have sex in this time but attempts were entirely unsuccessful

Name:

Rebecca Kyle

Email:

rebecca.kyle@tafensw.edu.au

Date:

3/7/2002

Comment

Wow. i posted my last remark without having read any of the guestbooks. This site is incredible.

Can anyone suggest a Dr in Australia? i've had the condition for over seven years - constant burning, no sex, no tampons etc. i've beem seeing Dr Richard Reid in Sydney and have had microsurgical removal of Bartholins Glands & flash pump laser. Also seen Marek Jantos (based in Adelaide) for biofeedback therapy (6 months). tried amytriptyline, prozac, testosterone trial and more. unfortunatley no improvement so i'm feeling a bit desparate. if you've had successful treatment with another Dr (preferrably Sydney) please email me.

r

Name:

Anne

Email:

Date:

3/7/2002

Comment

Dear B,

I'm glad that you read my post and that you are interested in my therapy. The hormone patch is a form of hormone replaceament therapy. My hormone levels were tested and it showed low estrogen. My doctor recommended the patch because it by passes the liver and goes directly into the blood stream. I also take 0.5mg of estradiol my mouth. This is estrogen. We stumbled onto this because I was usingestrace hormone cream internally. I began to feel better, but the cream eventually made me sting. My doctor suggested that I was feeling better because I was absorbing the hormone, so he prescribed 0.5mgs to be taken by mouth.

I'm not sure what made the biggest difference, probably being faithful about drinking large amounts of water, the glucosamine and eating more protein. I have found that if I have an egg with toast for breakfast rather than cereal, I feel better. My problems began after I was on a no fat, no protein,high carb diet. I lost lots of weight, but ruined my system.

I did try eliminating the effexor xr and the stinging came backso I began using it again. Lorazepam is wonderful for immediate results. It does make you sleepy, but my doctorfeels that it works directly on the nerve endings calming them down. How much Effexor do you take? Are you feeling any better? How long have you been taking it?

I believe that lot's of things play into my symptoms, but the hormones and meds have helped me a great deal. I hope and pray that you will recover completely. I have prayed for my health and I have really appreciated little things that I took for granted before the onset of this illness.

I hope that you will find what best suits you. Do you know of the Low Oxalate Diet? It seems to work. Try the Glucosamine. I order mine through Dr. Solomons who is working with the Vulvadynia Foundation. He feels that the N-Acetyl Glucosamine is the best for ladies like us who are sensitive to many things.

I hope this helps you. Will check back tomorrow!

God bless you,

Anne

Name:

E

Email:

Date:

3/7/2002

Comment

Name:

Ericca

Email:

marmalaideus@yahoo.com

Date:

3/7/2002

Comment

Well I got off the shot and went back on ortho tri cyclen, I'm not sure if that was the right choice but its a start. I haven't really started the diet but I am trying to stay away from the BAD foods. Just just so horrible I love green vegis and now I have to stay away from them as much as possible. Its amazing how this "thing" is still not all that heard about. When I went to Planned Parenthood the other day to change birth control methods, they have never even heard of Vulvodynia. Not really that shocking I guess. My primary doctor hasn't heard of it either. One of the things that makes me nervious is I've read most of the statements on here and most women have had this for more than 3 years and have tried a lot. I'm afraid that since I just got this that I'm gonna have it for years before I can get it under control. Anyone have any good lox-oxilate meal rescipes? I know theres a cookbook you can buy but I can't really afford it right now. I hope everyone has a good day and I'm ever so glad that now I FEEL that I'm not the only one and why me???

Name:

Christine

Email:

Date:

3/7/2002

Comment

To Anne:

I've just started reading a book that a pharmacist recommended to me. It's called "Breaking the Vicious Cycle" by Elaine Gottschall (sp?). While it is primarily intended for people who have serious digestive problems, such as Ulserative Colitis etc., the theory is that bacteria that can cause all kinds of problems start in the digestive system and feed on carbs and sugars, but when you eliminate these things the bacteria have nothing to live on and they die; thus your digestive system rebalances itself.

There is a diet in the book - and it's a tough one; however it seems as though it is not for life. Once your ok for a period of time, you can eat normally again.

I'm sure this is not the cure all for everyone here - but I do think that some of you may find it very interesting.

The book is not selling, or even recommending, any suppliments or anything like that - and the information is pretty well documented.

You can find it on Amazon. Check it out!

Name:

Shawn

Email:

Date:

3/7/2002

Comment

ABS:I have just finished a series of shots (steroid+)...there has been a reduction of swelling and redness. I am still having painful intercourse but day to day my discomfort had decreased. (My Dr only does the injections for 3 to 4 weeks and will do it twice: 6 to 8 times total.) I won't lie, it hurts but I would do it again. It is just getting through the moment! And even though I test negative for yeast we treat that as well. I just started biofeedback but it is to soon to comment. Just note that every body is different....what works for one may not work for all. I have found this site very informative and comforting. For the first time I feel like I am in control....Thank you to all for sharing! Keep at it ABS.

Name:

B

Email:

Date:

3/7/2002

Comment

Hi Anne, Thanks for your reply. To answer your question, I just began effexor xr 37.5 mg 1x a day about 3 weeks ago. Unfortunately, I am incredibly nauseous on it, but my doctor is suggesting I hold out b/c the nausea should go away in time. He seems to have found great success with effexor, so I'm trying it. But this nausea is awful.

I don't think my estrogen levels are low, but I can check it out. I have tried estrodial cream and it doesn't help at all. I've also tried estrogen suppositories and they don't seem to help. I guess the intention was to make the skin thicker down there.

I have tried the oxalate diet, but I don't seem to notice a difference. Actually, I sent urine samples to Dr. Melmed 4 years ago and he suggested I take calcium citrate, which never helped. So, I kind of gave up on him, but I didn't know that he'd done some research on glucosamine. Did you say you get it from his office-- that probably means it's not covered by insurance. Can I get it anywhere else? And there's no interaction with effexor?

Maybe I'll try eating less carbs. It's worth a shot. So far though, the only things that have helped are meds. I was on desipramine for a while, which did help, but I'm hoping effexor will help more. But it hasn't kicked in, so when I'm in pain, the only thing that helps is ice... ugh. What is that other drug you take when it's really bad? You said it knocks you out though... that's tough when you need to be productive in life.

Thanks for sharing your experiences. I hope you continue to feel well!!! I pray effexor xr will be the med for me b/c natural methods (I've had this for 6 years) don't seem to help....

Name:

Howard Glazer Ph.D.

Email:

DrGlazer@att.net

Date:

3/7/2002

Comment

This is to let you know that I have just revitalized the professional service provider registry and ask you all to invite your professional service providers to consider submitting their practices for inclusion. I have also added a database permitting patients to rate their professional service providers and I invite you all make entries and share your experiences with each other. For professionals to submit their practice information, to view the professional registry, or to add to the patient ratings of professional service providers go to http://www.vulvodynia.com/profregs.htm

ThanksHoward I. Glazer Ph.D.vulvodynia.com owner

Name:

Am

Email:

gracethroughfaith@hotmail.com

Date:

3/7/2002

Comment

Hi, everyone I was wondering if perhaps someone could e-mail me with some information on active release therapy. I have neverheard of it before. Is it performed by a chiroprator? Have any of you achieved any success with it. I am currently seeinga chiropractor for VVS and was wondering if perhaps he could use this therapy with me. Any information would be greatlyappreciated. Have a great day, folks!

Name:

Am

Email:

gracethroughfaith@hotmail.com

Date:

3/7/2002

Comment

Hi, everyone I was wondering if perhaps someone could e-mail me with some information on active release therapy. I have neverheard of it before. Is it performed by a chiroprator? Have any of you achieved any success with it. I am currently seeinga chiropractor for VVS and was wondering if perhaps he could use this therapy with me. Any information would be greatlyappreciated. Have a great day, folks!

Name:

Email:

miskes@kittymail.com

Date:

3/8/2002

Comment

Ericca, don't be discouraged. I would say you have a lot of things working for you: you are young, you have gotten a diagnosis and hopefully also a good doctor. If the doctor you are seeing seems to be out of answers, seek out another one.

You also have this site, the guestbook and lots of women who can give you information on treatments and doctors - that way there is so many things you don't have to learn the hard way.I believe one of the reasons so many women have been suffering for so long is they haven't gotten a diagnosis, have been neglected by doctors and have thought themselves completely alone.My guess is you will be feeling much better in a year or two, or maybe even be "cured". Hang in there.

Name:

D

Email:

Date:

3/8/2002

Comment

Hi: Yesterday, I was diagnosed with "yeast spores" and given boric acid capsules and difulcan.Has anyone else had this and what is it?Does the boracid help?

Name:

Email:

Date:

3/8/2002

Comment

Does anyone have any information about Fox-Fordyce disease in menopausal women (vulvar symptoms only)?

Name:

maritza

Email:

private

Date:

3/8/2002

Comment

Can anyone comment on Fox-Fordyce disease in the perimenopausal years - vulvar symptoms only. I have gained lots of experience but no real help from anyone, and that includes the vulvar "specialists".

Thanks.

Name:

Anne`

Email:

Date:

3/8/2002

Comment

Dear B,

The medication that I take for really bad days is called Lorazepam. It is a sedative, but very mild. I take 0.5 to 1.0 mgs according to the pain. My doctor hit on this after years of trying things. He felt that this med works on the nervous system and it calms nerve endings. It has worked for me.

It is not a cure, but it helps you get over the really rough spots. Drink lots of water. It dilutes whatever is going on.

Sorry to hear that you are nauseated with the Effexor XR. It does take a week or two to get used to it. Try taking Emetrol for the nausea. It is over the counter and helps when you have that yuky feeling. I use the lemon flavor.

I hope and pray that you find relief. Here's to lot's of great days!!

Anne

Name:

Peggy

Email:

pinkbooks@yahoo.com

Date:

3/8/2002

Comment

I have been suffering with vulvodynia for the past four years. I have been to several different doctors as I also suffer from fibromyalgia. I would like to know if anyone has any recommendations for a good gynecologist who can deal with these problems that is located in the Akron, Ohio area. Any suggestions are greatly appreciated. Thank you.

Name:

katherine

Email:

--

Date:

3/11/2002

Comment

I've found a treatment that WORKS!!! (at least for me). I'm28, and I've been dealing with this for about 4 years. It started after my first and only yeast infection, and numeroustreatments with over-the-counter yeast medication, followedby lots of anti-fungal creams, steroid creams, etc. which mydoctors tried when I still had a little lingering pain afterthe yeast infection cleared up. (These made the slight amountof pain turn ferocious, by the way--particularly watch out for steroid cream!)

I'm now being treated by Dr. David Foster of Strong MemorialHospital in Rochester, NY. I don't think he advertises widely,and it can take a couple of months to get in to see him, buthe's helped me tremendously. (He works with a dermatologist,Mary Gail Mercurio--they see patients together one Tuesday each month). He's treating me with a combination of desipramine(a tricyclic antidepressant, without the potentially nasty sideeffects of Elavil--which I had tried before, and which did nothing for me), and topical lidocane. I was reluctant to try another cream, but Dr. Foster claims a cure rate of 70% with this treatment, so I gave it a shot. The initial exam was themost painful I've had--but also the most thorough, and DEFINITELY worth it.

After about four months of this, I'm not completely cured--but I'm about 85% better. My husband and I hadn't had sex in three years, and now our sex life is almost as good asit was before this nightmare. I'm buying trousers in my own size again, I can wear jeans, and my daily life is almost never interrupted by pain. He's suggested that I start physical therapy in addition to the lidocane and desipramine,and I'm hoping that will complete the cure.

If you're living anywhere near Rochester, it's definitelyworth your time and money (my insurance doesn't cover it)to go see Dr. Foster--especially if the onset of your painwas anything like mine. It makes me angry to think that I'vespent three years feeling depressed and helpless about thisafter running through all the doctors in my area and all the conventional treatments (including 9 months on the low-oxdiet--I actually felt better once I started eating spinach andchocolate again!)

Good luck to everyone! Don't listen to doctors who tell youthat you just have to learn to live with it, and don't getdiscouraged and stop seeking help. The cure isn't the samefor everyone, but there ARE cures out there.

Name:

M.

Email:

Date:

3/11/2002

Comment

Katherine -

I'm glad to hear that someone with these problems is feeling better, but are you acutally better, or are you just numb?

How long are you supposed to stay on the medication?

Name:

dena

Email:

makeupartz@aol.com

Date:

3/11/2002

Comment

hello... i just started researching this condition for my dearest friend. she is 20 and has had vulvodynia for almost 3 years. it hurts my heart to read over all of these entries and not see any real cures, yet. i have written down alot of the suggestions for her so thank you for the information. if anyone knows of any dr.s in ohio please post those. thank you!

Name:

TML

Email:

Date:

3/11/2002

Comment

This is my first time on this site.I am 27years old and was just diagnosed with vulvar vistibulitis after 5 years of pain and visits to a number of doctors who did not know what was wrong.It is nice to know other people have these problems as I felt alone and like no one believed me.I am really down and frustrated at the fact that I could be facing a few more years trying to find a cure.Its sounds like there are so many things to try and most of the time they fail.I feel like just giving up and living with this problem.I am married and although my husband is supportive it really puts a strain on our relationship.The specialist I saw was in Vancouver, Canada as this is were I live.I have to use Monistat cream once a week for the next 7 weeks to make sure there is no yeast in my body and then go back to my gynocologist for the next step.I also have 5%xylocaine cream to use to numb the area before sex.Can someone let me know how effective this is as I have not used it yet.I think they may then put me on anti depressants.I am scared about the side effects of such a drug though.Can anyone who had the operation where they remove nerve tissue in the area let me know how this was.The doctor says this is a last resort after I try all the other steps first but I wish I could just get this done and my problem would go away.It seems like there is no hope and I get so frustrated as all the creams and things I have tried in the past do nothing.I am supposed to use 100% cotton tampons,underwear,no soap and wash the area lots during the day.Does this actually help at all.If anyone can help me with my questions please, please reply!!!!I feel better knowing there are alot of you dealing with the same issues.There sure does not seem to be much research on VVS.

Name:

TML

Email:

Date:

3/11/2002

Comment

I contracted HPV when i was 17 and was wondering if anyone else has this as well as vulvar vestibulitis.It sounds like HPV may lead to VVS.If so what treatments have you undergone?Thanx TML

Name:

Susan F. Brorwn

Email:

sfrazer44@hotmail.com

Date:

3/11/2002

Comment

I am curently taking Paxil and my problems are under control.

Name:

ABS

Email:

Date:

3/11/2002

Comment

Shawn-Thanks so much for your response. I am actually doing a lot better for the first time in months, so I am not sure if I want to go through with it. I have recently started celebrex, which seems to have had positive effects fairly quickly (thank you HeatherDB for mentioning celebrex). BUt if it does start to give you a great deal of relief please let me know. Thanks so much again.

Name:

ABS

Email:

Date:

3/11/2002

Comment

TML- I have been diagnosed for over 3 years now and i have had terrible experiences with anti-fugal creams such as monistat. You might react differently, but just in case I wanted to let you know that it did make the condition worse for a period of time. I use diflucan instead when treating yeast. I have tried several things such as elavil, low-oxalate diet, estrogen cream, different topical steriods, and other anti-depressants and so far the only thing that gives me relief is the celebrex and meditation. I hope some of this info has helped, but just remember everybody responds differently to each treatment, so don't give up and just keep trying new things...there is a lot out there.

Name:

ABS

Email:

Date:

3/11/2002

Comment

TML- I have been diagnosed for over 3 years now and i have had terrible experiences with anti-fugal creams such as monistat. You might react differently, but just in case I wanted to let you know that it did make the condition worse for a period of time. I use diflucan instead when treating yeast. I have tried several things such as elavil, low-oxalate diet, estrogen cream, different topical steriods, and other anti-depressants and so far the only thing that gives me relief is the celebrex and meditation. I hope some of this info has helped, but just remember everybody responds differently to each treatment, so don't give up and just keep trying new things...there is a lot out there.

Name:

Email:

Date:

3/11/2002

Comment

To TML and others: I don't know how some doctors come up with prescribing Monistat for seven weeks, it's crazy. First they should establish exactly which strain of yeast or bacteria you are suffering from. Sounds like a lot of guess work or delay tactics on their part. Diflucan is a much better drug, one pill that's it, if it is a yeast problem indeed. Educate yourselves read labels and demand tests are done and results are given to you for future use. The next doctor may need a history of medicines and reasons. Antifungals, antibiotics, hormone creams won't help if you don't need them...

Name:

Email:

sparker007@hotmail.com

Date:

3/12/2002

Comment

hello to all, I am 23 , I have been dealing with vulvodynia for about the last two years and was diagnosed this summer- my symptoms first occured after having used a yeast infection cream for my first and only yeast infection and now have this horrible illness!! i first read about this site when during the summer was going through horrible symptoms and this illness was putting a huge strain on my relationship - i had been told that i had herpes - i did not see how this could have been possible having been in a faithful relationship for 1 year before this occured and am still with him now. i had to start doing research my self. .vaginal exzema had been mentioned and when looking on the internet i found this site - for which i am so thank ful - for if i hadn't i don't think i would have been diagnosed if it had been left up to the doctors i had been dealing with - seeing as our sex life was fine before the first / only infection and then all of the sudden I was unable to have intercourse, we had a normal sex life before and now for the last year and a half have probaly attempted intercouse 10 times and perhaps succeded maybe 3 times .

i can't help but feel so angry - i am tired of being poked and prodded - i live in toronto canada and everyone who contributes to this site seems not to live in canada, if anyone has any insight into the toronto health care system or a good knowledgable doctor regarding vulvodynia this would be great -

i am fairly positive that all of this was brought on by the yeast infection cream seeing as after having inserted it i experienced the most painfully excrutiating experience of my lifewhen i went to the vulvodynia clinic here and mentioned that it was brought on by the use of this cream it was reacted to as though it were completely normal - and was told it wasn't anything they had'nt heard before - THIS CANNOT BE OKAY!! - has any one else had their experience brought on by the use of one of these products - CAN THIS BE LEGAL??!! - there were no warnings on the packaging or anything that a possible allergic reaction could potentially ruin you sex / intimacy life indefinately!!- i have thought about looking into a lawsuit against the company - does anyone share these feeling or experiences!!?? THIS CANNOT BE TOLERABLE and just accepted by the heath and drug boards - i suffered from depression long before this incident and have tried going off the meds and could cope but now with this contributing to an already present depression it seems to be too much at times - i will be going back on the anti depressants next week

from reading the comments it seems the pill can affect the severity of the symptoms - I have recently switched to Micronor it seems to be great - i now only menstruate every other month - the onset of my symptoms always seems to be just after my period from the dampness in the affected area - so having my period every other month helps.

my apologies if this is a long letter but i have wanted to write for some time now and hope that someone will hear me and perhaps have some insight as to what i should to now.

Name:

M.

Email:

medusa_m5@hotmail.com

Date:

3/12/2002

Comment

I have a question for everyone whose story begins with "I had a yeast infection, and used yeast infection cream and now I have all these problems . . ."

When the "yeast infection" started - did you go to your doctor and get a culture done which came back positive for yeast? Or, did you guess that the discomfort (itching, discharge, whatever) was a yeast infection and treat it yourself with an over-the-counter medication? (That's what I did.)

What if the initial irritation that we thought was yeast was never yeast at all - and was actually the onset of this long term problem that we all have??

In other words, just as an example of the possibilities, what if you actually have some sort of bacterial infection . . . You decide it's yeast when you didn't know for sure, use OTC yeast cream, which isn't going to help if you don't have yeast, and in the mean time the bacterial infection gets worse - so then you think it's a result of the yeast meds!! I'm not saying that it's necessarily a bacterial problem, I'm just using this as an example.

I've been thinking a lot about such a possibility and I would love to hear what others think. Please let me know.

Thanks for reading.

Name:

B

Email:

Date:

3/12/2002

Comment

Anne-- thanks for your comments re: treatment of nausea for effexor-- will try that for sure.

Just a general question for everyone else... do you think that the birth control pill has anything to do with this. I've gone off of it after many years but it doesn't seem to make a difference.

Thanks

Name:

Jen

Email:

whereshome@hotmail.com

Date:

3/12/2002

Comment

To TML, I too live in Vancouver and have been seeing Dr. Sadownik at the vulvar disease clinic at the VGH. So far, I have tried a bunch of different creams steroid, etc. with no relief. I am currently using estrogen cream and doing physical therapy with a wonderful woman by the name of Jackie Wells in Richmond. Though I have been very off and on with the exercises I'm supposed to do, I have in the past felt some improvement although right now sex is still impossible. My relationship with my boyfriend has also been strained immensely.

The vulvar disease clinic at the VGH is now offering a couple of seminars on vestibulitis and vulvodynia in April, you can bring your partner to one of them. You should check into it. I tried the xylocaine cream about 2 years ago around the start of this miserable disorder and it helped me slightly with the intercourse but perhaps I also wasn't using the right lube (KY sucked I thought and Astroglide makes me sting). I find now Slippery Stuff to be the best helping me with dilators. Please feel free to contact me because I would really like to talk with someone in my area.

To the girl in Toronto, there's a gyn who's a the head of gynaecology at either Toronto general or Mount Sinai I can't remember which, but she was featured in an article (I'm sorry I can't remember her name) but she seemed to be The specialist in Toronto.

Take care.

Name:

D.

Email:

Date:

3/12/2002

Comment

TML and others-

I was diagnosed with a yeast infection (after doctor looked under the microscope) and at first the Monistat worked wonderfully--my symptoms subsided. Then I had a terrible reaction to the cream, and it felt as if my insides were being ripped apart. I had to go to the emergency room. The stomach pain went away, but not the pain/burning in the vestibule. I certainly think I reacted to the Monistat. My doctor says that I could have been so hyper-sensitive to the yeast that my body had an allergic reaction. either way, I am sure the chemicals in the Monistat (stay far away from proplyne glycol) didn't help. PLEASE ask your doctor for Diflucan. Stay away from the creams!

Name:

Ericca

Email:

marmalaideus@yahoo.com

Date:

3/12/2002

Comment

I just recently changed Birth Control methods from the shot to the pill ( which really doesn't matter since I can't have sex anyway)since I've heard Depo may be a contribute. But now I don't think that was such a great idea. For the past week since I started on the pill I get horrible stomach pain in the morning and I now have a discharge. Which is really odd to me because I have never ever had a discharge and now I do plus I hurt down there almost all day stinging, itching... Which my case it use to be only at curtain times. I'm not sure what to think at this time. I can't really go get checked out because my OBGYN and my family doctor don't know much about Vestibilitis. I can't get into the OSHU Vulva clinic until the end of May. IS THIS NORMAL, when changing methods of birth control and my body just has to adjust???

Name:

nicky

Email:

cornelis.sgroot@ntlworld.com

Date:

3/13/2002

Comment

hi, ive recently visited my gyn after a four month wait, ive suffered with a really bad yeast infection which lasted 5 months, i went to see the gyn thinking i had vv, but on examinatin, was told the skin condition was caused probably by a lack of estrogen, the whole of my vagina is red and sore and painful and it has an effect on my bladder at times, ive been given an estrogen cream ive got to inset this cream every night for 2 weeks then its 3 times a week there after, its been 3 weeks now with not much relief does anyone else have this condition, and could u please tell me when to expect relief, im not even sure my gyn had made the right diagnosis, after reading everything on here...

Name:

nicky

Email:

cornelis.sgroot@ntlworld.com

Date:

3/13/2002

Comment

hiive seen my gyn after a four month wait, what ive got is a skin condition which can be caused by not having enough estrogen in my vagina, on examination the gym told me its redder than it should be, but didnt look to bad, but it feels very bad, its a burning sorness, and ive got the feeling of pressure on my bladder constanly, ive been given a estrogen cream to insert everynight for 2 weeks and 3 times a week after that im not feeling any better yet, im just hoping ive been given the right diagnosis after reading all the posts on here im feeling like this will go on for ever, does anyone else have this condition and are u better now how long does this take to heal ,

Name:

Tina

Email:

Date:

3/13/2002

Comment

To the women wondering about getting off the pill/depo: if you can't have sex, why bother messing with your hormones? The hormones and the immune system is closely linked, maybe by taking the pill you are lowering the bodys defence system?

My symptoms started to subside about 6-8 months after I got off the pill, now I am about 90% better though not as I was before all this. I suffered with yeast and bacterial infections all the time, now next to nothing.I believe we put a lot of uneccesary strain on our bodies with all kinds of pills and medications. I'm not exactly the new age hippie type, but to think about all the additives in food, cattle being fed hormones and antibiotics etc really worries me. This eventually has to have some damaging effect to human health, maybe this won't be evident in another ten or twenty years. Sorry for rambling...

Name:

Email:

Date:

3/13/2002

Comment

To Nicky: You had to wait four months for a visit and that's too long. Are you sure you have low estrogen or did this one doctor say that's what it looked like? Many women with vulvodynia suffer with the same symptoms, redness, burning, itching and so on. Hormones may or may not play a part in the problem. I agree in part with Tina why take birth control and risk the hormone problem if you are in pain anyway? You can do as many others have done, start to eliminate irritants soaps, deodorants, food additives if you do have sex be aware that semen can be very irritating. Be patient and don't use medication after medication hoping for a miracle, if your doctor gives you hormones or steriods request the test data that justifies it!!!! BE your own health advocate it is not in your head and the doctors work for you not the other way around..

Name:

Dana

Email:

Date:

3/13/2002

Comment

Has anyone had cortisone shots in the vulvar area? I've heard that some people are helped by this, but I'm afraid to try it...

Name:

D

Email:

Date:

3/14/2002

Comment

I am also interested in knowing more about the cortisone shots in the vulvar area. If anyone has experienced this, good or bad, please post and indicatethe percentage, strength of the cortisone and frequencyof the injections. thank you.

Name:

Kathy

Email:

Kpnewman54@aol.com

Date:

3/14/2002

Comment

Hi, I have just found this website and it is wonderful! I started out by reading the eighteenth guestbook and I intend to go back and read them all. I have had Vulvodynia for almost 11 years. I can tell you some stories that will make you cry, but that is for another time. Right now what is important to me is the Depo-Provera shot. This is the first I have even heard that there might be problems with this and the vulvodynia. Why am I so worried? Because I have two daughters that are taking the shot! Now as all you mothers can understand, I will take the pain, but please don't let my daughters have to go through with this horrible thing. Please tell me all you know about the Depo shot so I can talk to my doctor and hopefully inform my daughters. Thank you.

Name:

Nini

Email:

macsilver7@earthlink.net

Date:

3/16/2002

Comment

D: I was rereading your post of 2/22 and I was wondering if I could trouble you to tell me how Dr. Stewart helped you go to all those doctors. You can email me privately if you would like to.Thanks much!!! :-)

Name:

heather db

Email:

HADeBris@aol.com

Date:

3/16/2002

Comment

Hello,I'm 22 yrs old and i have had this horrible condition since i was atleast 15. At the beginning though, it was intermittent... it didn't always hurt like hell- just sometimes. Let me re-phrase that-- it did always hurt, but it was only intense half the time.I decided that i wanted to get on the Depo Provera Shot right before my wedding... i was 20, and i had a million things to do, and then i was always so tired that i was starting to forget the pill. <i didn't know at the time that i also was suffering from Hypo-thyroid Disorder>I took the first shot in Aug of 2000, and it was great. i had no funky reactions, and my periods stopped <i loved>, and then i took the second shot in Nov of 2000, and that was it.

I had Horrible reactions- such as severe acne-everywhere... and moodswings that were horrible... i was crying constantly.. and much more. but my vulvodynia had gotten severe at that point also.

it could be a coincidense- i'm not a dr.

but now i can not where jeans... i can't ride a bike... i can't make love to my husband... it makes me feel like i'm not a whole woman. what about having children? i can't handle my husbands penis- and i expect to have a 6+lb infant?

this condition is not only physical- it is extremely emotional. it effects how i feel about myself.. i'm not the confident, sexy lady my husband fell in love with- now i am the timid, "no" lady.

I usually accept this without complaint, but today is a 'reality' day for me... i had thought i found my cure, but i didnt... i had been put on Celebrex for the arthritis in my knees, and for the forst 2 weeks i took it, my VV went away. i had actually had sex with my husband for the first time in 8 months... Celebrex is an Anti-Inflammitory. i thought i found my cure. but i'm still taking it daily and my VV came back. I guess i just had a few "good " days.

Good luck to all... luv,heather

Name:

RMO

Email:

parisgia@hotmail.com

Date:

3/16/2002

Comment

Hi Jen and TML. I also live in Vancouver, BC and have suffered from Vulva Vestibilitis for about 8 years. I would love to chat with someone who lives in my area. TML, I have had the laser surgery, and it helped a bit - but I still feel pain during intercourse. I have also been on every medication you can think of, and for the last 3 years I got frustrated and stopped treatment. However, I have decided to stop feeling sorry for myself and get back into treatment. Jen, thanks for the information on the seminars at VGH. Please feel free to e-mail me anytime.

Cheers!

Name:

Lisa Vaughan

Email:

lisagvaughan@yahoo.com

Date:

3/19/2002

Comment

I feel hopeful now that I have found this website. Thank you so much. But I wasn't able to look at the list of Doctors in my area that are knowledgable about this problem, can you help? I live in Phoenix Arizona. Thank again.

Name:

Email:

Date:

3/19/2002

Comment

For Lisa: contact Dr Gordon Davis who excels in vulvar disease 602-265-1112. I dont think you will be disappointed.

Name:

T

Email:

Date:

3/19/2002

Comment

The first time I posted was back in 99 in book 7. At the time I had been struggling for 6 years and now I've just passed the 9 year mark. My life has been turned upsidedown, I'm physically and emotionally drained. I don't feel like me anymore. I look at the hollow easter bunnies on the store shelves and I feel like that, hollow and empty. I really don't know what to do anymore, I feel trapped. I'm stuck here in a body that drives me crazy but I have kids that need a mom to be around for a least a few more years till they are grown. I have no desire to do anything anymore, I'm just going through the motions of life everyday. I couldn't even read the entries in the guestbooks for a long time because I just got so depressed and sad for everyone else who is suffering with no real help in sight. It's just not right. Thanks for taking the time to read this, I have a hard time opening up to anyone in my life to talk about how desperate I'm feeling and I just had to get some of this off my chest before I explode, thank-you, I'll try to hang in there but it is not easy

Name:

DMS

Email:

yteews01@hotmail.com

Date:

3/19/2002

Comment

Dear T.:

I know just how you feel. I also feel like I am just going through the motions of living. I always compaired it to an alien taking over my body and locking the real me in a closet or something. I haven't tried myself and I don't know hwere you live but please consider Dr.'s Berman & Berman at UCLA. Visit there website at "newshe.com" I have their book. They do look very promising and if I'm not successful with my current doctors I'm considering flying there from Pennsylvania. Please write to me personally at my email. We need to talk.

Name:

M.

Email:

Date:

3/19/2002

Comment

Hi Everyone -

I just returned from seeing Dr. Davis in Phoenix; I flew there from the east coast. I don't want to take up a lot of space posting my whole story, but all I want to say right now is he was very thorough, and his diagnosis and route of treatment sounds good. As I'm just getting started, I have no good results to post, but I will definately post in complete detail if I start getting any good results.

One thing I will say was that it was unquestionably the most thorough and informative exam I have had since this whole mess started (2 years ago).

I promise I will post any good news as it happens.

Name:

Valerie

Email:

MYWILDLOVE112@aol.com

Date:

3/19/2002

Comment

I just found out that I have Vulvodynia. I have been in terrible sometimes crippling pain since I was a child. Sex is nearly impossible most of the time. My fiance understands but he still feels rejected and like I dont want to have sex with him. I do and its really difficult. He has been very supportive about it and we have been open about it and coping together. I have missed work and school because of this and cannot enjoy life to the fullest. There are things I cant do that others can. I feel realy bad about myself because I feel like I am not a complete woman. I cant even engage in the most natural function of life. But now that I know there is hope for relief I feel much better.

Name:

Vanessa Gabisan

Email:

vanessa.gabisan@veridian.com

Date:

3/21/2002

Comment

I am looking for a dermatologist who specializes in vulvar pain. I have raw looking skin with fissures and redness. I have been in terrible, unrelenting pain for one and half years.I have seen many gyns, none have been able to help.I live in Washington DC.

Name:

Email:

Date:

3/21/2002

Comment

Hi:

I was wondering if any of the former regular contributors to this guestbook have moved to another site?

If so, would you please post where you are contributingyour progess and ideas on vulvodynia.

Thank you.

Name:

Diana

Email:

Date:

3/22/2002

Comment

Can any one recommend a dermatologist for vvd in the Tacoma/Seattle area? I think it's time I had the skin checked out by someone other then a GYN. Thanks

Name:

Jean

Email:

Date:

3/22/2002

Comment

Hello All,

I have posted this suggestion in the past for those with dyesthetic vulvodynia. I apply a small amount of a cream called EMLA to areas affected (never mucous membrane area) and it gives me hours of relief (itch, burn, sore feeling).I have used it for about a year with no negative side effects.It is available by prescription in the US or can be ordered over the internet from Canada. It costs about $50 a tube and lasts me a couple of months. It truly saves my sanity.Maybe this can help you too.

Jean

Name:

Frank B.

Email:

Date:

3/22/2002

Comment

Regarding former regulars to the site: I have posted over the last two years and anyone reading back that far has knows my wife's symptoms well. This has been more of an education than any office visit. Many learned Ladies exploring many possible causes and treatments. I'm sure some have gotten relief from their symptoms so don't give up hope. You should realize this is not in your head the pain is real and for right now there may not be an answer. I still feel there are several different conditions, causes and cures to all these symptoms called Vulvodynia. I think serious research not doctors prescribing whatever pops into their heads will hold the most promise to those suffering. I wish you all continued strength and patience along with that of your loved ones.

Name:

Leanne F. Heintz

Email:

LFHSTARR@AOL.COM

Date:

3/22/2002

Comment

I was a vulvadynia patient for 3 years in New Jersey from ages 26-29. I went thru several doctors and finally found one at a university medical center in New Jersey whom treated me with elevil & interferon. I wanted to die. I couldnt sit, I couldnt do anything. I used to stay up at night rocking back in forth in my bed saying why me? I feel for everyone in this situation. My vulvadynia symptoms disappeared but i did have my appendix rupture 2 years later and then an ovarian cyst rupture, then some endometriosis. I dont know if this is all related. If you saw me you would say wow!!!!!!!!!!You look so good and healthy. But I still live in fear this could happen again. I would do anything to give support to someone in this situation. Thanks Leanne Heintz

Name:

Donna

Email:

Date:

3/23/2002

Comment

I have been suffering for almost three years with recurring soreness and burning of the vaginal area. I have had some relief where it was near normal, but then it recurs again. My doctor says I am a classic case of lichen planus/ desquamatous inflammatory vaginitis. I have WBC's , squamous epithelial cells and no bacteria present in the vaginal smere. In my reading about the condition there are theories that it is vaginal lichen planus only. Some say it is a form of strep bacteria. Basically it is a skin disorder, and a very frustrating one at that. There is no cure for lichen planus, but trying steroid cream and antibiotic cream together. I get some relief, but the minute I stop it seems to recur.Then I don't know if it is the skin disorder, or the steriod creams causing the reaction. There isn't a known cause for it, but it is thought to be an autoimmune disease. I do get some itchy bumps on my wrists and legs sometimes, but the worst place for me is vaginally. Lucky me. I am 41 years of age and I wonder if hormones play a role, but I believe that I have had this a lot longer that I thought and that the yeast infections I treated over the counter were the start of this problem. I had one culture that showed a brewers type of yeast, but all my cultures since have been negative and I still have the symptoms. My doctor doesn't think that it was a cause of my symptoms. My doctor cant offer me very much, he says the only other offer is a specialist in Phili., but he may do the same thing. I am trying to go the natural way, looking into a product called Gynatren, that puts the good bacteria back into the vagina, and restores the PH. I don't know if it will help. I recently read an article about autoimmune dideases, and the fact that errent cells from mother and child during pregnancy cross to the wrong side and the body years later attacks these cells. they can settle in organs and the skin. It is mostly in mothers of sons, but can occur in women who had daughters , and those who never bore children from their own mother. Very interesting article, sort of like a graft verses host syndrome. I am wondering if anyone else has suffered with lichen planus, and what relief they had. I at least know what i am afflicted with now, but being intimate always causes me a lot of soreness of the skin.

Name:

Frank

Email:

Date:

3/24/2002

Comment

To Don

Name:

Frank B.

Email:

Date:

3/24/2002

Comment

To Donna:My wife has had many bouts of yeast infections. They seemed more frequent when we were first married. We wondered what the possible cause or causes could be. So many things came to mind but the doctors never went beyond prescriptions of monistat . Several months ago I read an article which mentioned how semen upset the Ph balance in the vagina. Thinking back over the years it makes perfect sense that even though we kept ourselves clean and healthy it was the very act of lovemaking that lead to a yeast infection. I never liked using condoms so my wife took birth control pills for years, I'll bet they would have prevented some of the problems caused by semen. We read so much here about getting the vagina back to proper Ph levels but not enough about what upsets that delicate balance. Antibiotics, douches, hormone levels are just a part of the picture. Since my wife began to experience a recurrent tear at the base of her vagina we have reduced the frequency of lovemaking and in turn her yeast infections are now rare. There might be something to that theory. Best of luck with your treatment.

Name:

Donna

Email:

Date:

3/25/2002

Comment

In my previous post I mentioned about yeast infections, and treating myself in the past with over the counter medicines. I now think that i didn't have a yeast infection at all, and that it was a start of this lichen planus condition. It bothers me that there is no cure for it, but i have recently found that the treatment that i have been receiving of steroid cream twice a day for one week may not be long enough. I also heard from a doctor overseas that lichen planus often shows up around the time of menopause. i believed all along that my problems may be hormonally related. i will try the steroid cream for a longer period of time with a product called multi-gyn that I get from Holland. it is natural and restores the PH, and soothes the skin. i had success with it before, and I will also try the gynatren to restore the healthy bacteria that produce H2O2, and lactic acid. I am going to take some natural preparations to resore my hormones too. You can read about both multi-gyn, and gynatren on the internet. A german study said that the cause of DIV is not enough of the good bacteria in the vagina. I will never give up, i learn as much as I can about my condition. You almost have to search out your own treatment, because the doctors do not always want to work with you. i think they are threatened sometimes when they have a patient who demands to look at not only the traditional medicine avenue. I'll let you know if I have anything to report. My condition is rather rare, so there isn't a lot the doctors know.

Name:

Donna

Email:

Date:

3/25/2002

Comment

In my previous post I mentioned about yeast infections, and treating myself in the past with over the counter medicines. I now think that i didn't have a yeast infection at all, and that it was a start of this lichen planus condition. It bothers me that there is no cure for it, but i have recently found that the treatment that i have been receiving of steroid cream twice a day for one week may not be long enough. I also heard from a doctor overseas that lichen planus often shows up around the time of menopause. i believed all along that my problems may be hormonally related. i will try the steroid cream for a longer period of time with a product called multi-gyn that I get from Holland. it is natural and restores the PH, and soothes the skin. i had success with it before, and I will also try the gynatren to restore the healthy bacteria that produce H2O2, and lactic acid. I am going to take some natural preparations to resore my hormones too. You can read about both multi-gyn, and gynatren on the internet. A german study said that the cause of DIV is not enough of the good bacteria in the vagina. I will never give up, i learn as much as I can about my condition. You almost have to search out your own treatment, because the doctors do not always want to work with you. i think they are threatened sometimes when they have a patient who demands to look at not only the traditional medicine avenue. I'll let you know if I have anything to report. My condition is rather rare, so there isn't a lot the doctors know.

Name:

Donna

Email:

Date:

3/25/2002

Comment

In my previous post I mentioned about yeast infections, and treating myself in the past with over the counter medicines. I now think that i didn't have a yeast infection at all, and that it was a start of this lichen planus condition. It bothers me that there is no cure for it, but i have recently found that the treatment that i have been receiving of steroid cream twice a day for one week may not be long enough. I also heard from a doctor overseas that lichen planus often shows up around the time of menopause. i believed all along that my problems may be hormonally related. i will try the steroid cream for a longer period of time with a product called multi-gyn that I get from Holland. it is natural and restores the PH, and soothes the skin. i had success with it before, and I will also try the gynatren to restore the healthy bacteria that produce H2O2, and lactic acid. I am going to take some natural preparations to resore my hormones too. You can read about both multi-gyn, and gynatren on the internet. A german study said that the cause of DIV is not enough of the good bacteria in the vagina. I will never give up, i learn as much as I can about my condition. You almost have to search out your own treatment, because the doctors do not always want to work with you. i think they are threatened sometimes when they have a patient who demands to look at not only the traditional medicine avenue. I'll let you know if I have anything to report. My condition is rather rare, so there isn't a lot the doctors know.

Name:

Marlo

Email:

Marlo06040hotmail.com

Date:

3/25/2002

Comment

If anybody thinks they are suffering from being overmedicated with steriod creams this may be some help to them. I was diagnosed with vulvodynia by one docter about 4 months ago. In the last 4 months I have used no kinds of creams, and the pproblem still did not improve. Finally about a week ago I went to my primary docter who told me that either I have lichen whtever or I was just thinned out the skin on the opening of my vagina with steroid creams. She couldnt really say how much time that would take to heal on its own. So she prescribed me Zonalon (doxepin hydrchhloride cream) 5% and let me tell you it cleared everyhing right up. I feel aboustly normal after 7 months of pain and itching. It is not a steroid its a tropical cream.

Name:

Frank B.

Email:

Date:

3/25/2002

Comment

To Marlo: If you have read through the last few guestbooks you know that many Women with vulvodynia have that thin skin problem with their vulva. My wife started getting a recurrent tear in the same spot the six o'clock position. Doctors prescribe Estrace and other steroid cremes in the hope of strengthening the skin. We have seen no improvement at all. My wife does not suffer with lichens. I have not read of thinned skin of the vulva reversing to normal. I am going to check out the med you mentioned but to be honest like I said nothing has undone the tearing so far. When you said thin skin did you also have a problem with tearing? If so did this medicine really make it better? Thanks

Name:

Marlo

Email:

Marlo06040@hotmail.com

Date:

3/26/2002

Comment

Frank,

All that I know is that what she described that it looked like was a patch of red and white skin located on the 6 oclock position. I know a lot about your wifes situation, because I too am from CT.. So through the guestbooks I followed your case. I believe it is very possible for your skin to tear from overuse of steroid creams. And maybe with time alone it cannot return to normal because of the moisture down there. I don't know if they were tears, all that I know is that it would not go away, and was driving me crazy with pain. My suggestion to you is to stop her from treating her self with steroids and antifungals, I honestly think they can be more damage that good in situations like these. I think your wife has been overmedicated, and to get out of this pattern seems impossible because you do want something to work . I know that she is desperate, and I feel for her. Look into this, maybe with time and then trying some Zonalon it will be over. By the way one docter diagnoised me with vulvodynia and the my primary thought thaat it was possibley lichen or overuse. You are in my prayers.

Name:

Frank B.

Email:

Date:

3/26/2002

Comment

To Marlo: Thanks for the response. She hasn't used any medicines for several months now. Like many Women with vulvodynia the tearing started prior to any steroid use. I know what you are saying about the steroids thinning the skin which is exactly the opposite of what needs to be done. My wife had a procedure done to check for lichens which she does not have. I will return the prayer and hopes for relief.Thanks again..

Name:

Email:

Date:

3/26/2002

Comment

Marlo, what are the ingredients in Zonalon? I am allergic to most things. Did you have a burning pain? What were your symptoms?

Name:

Marlo

Email:

Date:

3/27/2002

Comment

Zonalon cream contains doxepin hydrochloride which it is a cream form of an antidepressant, cetyl alcohol, isopropyl myristate, glyceryl stearate, PEG-100 stearate, petrolaatum, benzyl alcohol, titanium dioxide and purified water. My symptoms were mostly pain all the time, burning and it always felt like I had a yeast infection.

Name:

Christina

Email:

christina_bunny@hotmail.com

Date:

3/28/2002

Comment

A woman I am on a list serve with is conducting a servey on the quality of gyn exams. This information with our input will be shared with health care professionals with the hope of bringing better care in womans health care. If you have a few minutes to do so please fill out this servey and feel free to forward the link to others. She wants healthy women as well as women with vulvar disorders to fill out the servey.

http://www.sexualitytutor.homestead.com/GynecologicalHealthCareSurvey.html

Thank You,

Christina

Name:

Christina

Email:

christina_bunny

Date:

3/28/2002

Comment

Hi everyone,

I apologise that I have not kept up on the messages. I just read through everything in the last couple of months that I have missed and noticed that many of you have questions on how depo can affect you with vulvodyina.

Depo Provera is a progestin only form of birthcontrol. In fact provera is the strongest progestin currently on the market and is several times stronger then the progestin your body produces naturaly. The progestin is used to prevent pregnancy, but at the levals it is used at and with no estrogen given along with it, Depo Provera causes very high levals of progestin in the body and the estrogen levals drop. Estrogen helps our bodys tissue to remain healthy, thick and elastic, is responsible for the amount of moisture made in the vagina, and estrogen keeps your vaginal ph at normal levals. When the estrogen is depleated, you begin having some of the symptoms that women normaly have at menopause. The vaginal and vulvar lining thins, making it more suceptible to inflamation of the tissue and the glands, as well as tearing and cuts, and your vagina stops producing as much moisture, agravating any inflammation or fissuring. The ph in your vagina rises, bringing down the amount of healthy lactobacillus and making room for yeast, unhealthy bacteria, or even bacteria that is normaly present already to grow in its place. Women will notice thease symptoms and treat for yest or bacteria, and even do things to bring the ph down, but may not know that the low levals of estrogen are responsible. Untill my current specialist told me thease things, I had no idea (and nether did any of my other doctors) that without stoping the depo and replacing the lost estrogen I would be chasing the ph and infections forever without getting to the cause.

Unfortunatly for me, I was on depo for 6 years before anyone suspected that it was responsible for my symptoms. The doctors and the leaflets for the medication tell you about the lost lubrication and the lining of the vagina thinning, but do not tell the magnatude of problems that may occure. I took estrace and estring for a year before we realized that we could not reverse the inflammation in my vestibulary glands and that I needed surgery. I had my vestibulary and bartholins glands removed last May they had swollen to 4 inches long! Healthy glands are no bigger then a centimeter. They had grown untill they reached the bone.

Fortunatly surgery was a success for me. I can now have pain free intercourse. I still battle frequent yeast infections and have lichen sclerosus to deal with as well, but will probably be suceptible to that for the rest of my life. I am just thankful that I found such a wonderful doctor.

I realize that not all women have thease problems with depo, but many have. If they do not take the drug off of the market I would like to see them put clearer warnings of ALL the possible side effects and risks with long time use.

If anyone wants more information about depo and possible problems, and would like to talk with other women who have issues with depo too, there is a list serve on yahoo groups for Depo problems, and another called Women Against Depo. Just go to yahoogroups.com and to the womens health section and you will find both groups.

I hope that everyone is having better days,

Christina

Name:

Kennedy

Email:

Date:

3/28/2002

Comment

Does anyone have a recommendation for a vestibulitis specialist, pelvic floor therapist, or active release therapist in or around Kentucky?

Name:

Email:

Date:

3/28/2002

Comment

How often are you applying the doxepin cream?

Name:

Amy

Email:

Date:

3/28/2002

Comment

Mike, I am in the Seattle area as well. I have been seeing a specialist in Seattle since 1991. Several doctors were convinced I had all sorts of other conditions, too, before I was diagnosed. From what I see on my first visit to this website that is alarmingly all too common.

Name:

kristin

Email:

krissy42042@aol.com

Date:

3/29/2002

Comment

hi i'm 20 yrs old and i've been suffering for the last 3 months. I 've been to 3 gyn's, the first one told me i had a bacterial infection, then a yeast infection, and the second one told me i had a bladder infection..but i know o don't because it doesnt hurt that way. I went to a new doctor today who says shes willing to help me get through this she also gave me some estrace cream and i'm going to try the diet. Has anyone had any luck with the cream?

Name:

Frank B.

Email:

Date:

3/29/2002

Comment

To Kristin: Please read the last two guestbooks before you continue with Estrace. Gyns give Estrace for the heck of it , it's what they give when they don't have a clue and believe me none of them have a clue. Estrace is steroidal estrogen, think about it, do you have a low estrogen level? Probably not, now if you were going through menopause it could be of help. Doctors don't know what causes vulvodynia, they treat it with estrace, antidepressants and a long assortment of antifungals ,antipuritics( anti-itch) antibacterials and whatever they can think of including surgery. Don't give up hope but do ask why a specific medicine is being given, it is your body and some of these medicines may make other things worse. Best of luck....

Name:

Diana

Email:

Date:

3/29/2002

Comment

Amy, I live in Tacoma. Can you tell me who you are seeing in Seattle? Thanks

Name:

Sue

Email:

Date:

3/30/2002

Comment

Hi everyone: There's a short article on Vulvodynia in the latest First magazine. It's on page 22 and called "Private Ouch." It doesn't really tell us anything we don't already know, but at least it's being discussed. It says that "some researchers believe a bacterium is to blame, others think a virus might be responsible. Either way, scientists have been unable to pinpoint the cause." I'd like to send this article to every stupid, uncaring Dr. I saw who told me there was nothing wrong; it was all in my head."!!!!!!!!!!!!!!!!!!

Name:

kristin

Email:

krissy42042@aol.com

Date:

3/30/2002

Comment

Frank-i thought estrace was used to treat vulvodynia because it toughened up the skin...are there any other kinds of estogen cream that aren't steroid based and might help me out? Please let me know, any information would help. Thanks

Name:

kristin

Email:

krissy42042@aol.com

Date:

3/30/2002

Comment

i just read some of the last 2 guestbooks...last year i had an hsv outbreak-it was really strange because i had been with my boyfriend for 3 yrs who had no symptoms or been with anyone else. I had not been with anyone besides him for about 4 years so it was very strange. I havent had an outbreak sine 9/01 but the pain was not really bad then. i can trace the beginning of my pain to around the initial outbreak. It was on and off at first, only when i got my period, but since 3 months ago, when i was diagnosed with a bacterial infection, its been really bad. I saw one doc and she said i had a cut and gave me clobetesol and told me to take baking soda sitz baths,which helped the cut heal But towards the end of the week using the cream and baths i started having pain when i went to pee, then pain all over, except where the cut was(at the top where the clitoris is), Now i have pain around the urethra mostly on the left side. It is VERY painful to touch, I cannot have sex or oral sex . Anyways my boyfriend is awesome and says he'll wait as long as it takes. I'm also a vegetarian...does anyone think this could have anything to do anything...i know vegetables and some fruits have high oxalate, thats why i'm trying the calcium citrate. Anyways, if anyone has any advice please let me know...

Name:

Frank B.

Email:

Date:

3/31/2002

Comment

To Kristin: I wanted you to read the last few guestbooks so you would understand what some of the other ladies are going through, the many different medicines they were given and the many failed attempts. Estrace toughens the skin if you have low estrogen, gyns give it to vulvodynia sufferers for this reason unfortunately low estrogen has nothing to do with vulvodynia. From the many posts I have read I seriously think this has nothing to do with diet, hormones, sex partners to name just a few. I don't know your pain but I understand the desire to find out what is causing pain and stop it. You should be your own best friend and health advocate. Just like you found this site use the internet to get smart about the medicines your doctor wants to give you. Dont' be shy or scared to ask questions of your doctor. There are simple tests that can be done prior to giving medicines, the problem is if you don't have low estrogen, if you aren't suffering from a sexually transmitted disease, if there isn't an unusual bacteria present then there isn't much the doctors can do for you with the exception of masking the symptoms and treating the pain. Sounds like you have a very understanding boy friend maybe he can work with you to explore some of what I talked about. Sometimes there isn't much we can do except slow down and accept the situation. We all need research to be done in order to find the cause or causes along with the treatments or cures. I wish you relief from your symptoms and the strength and patience to deal with them.

Name:

Amy

Email:

Date:

3/31/2002

Comment

Diana- The specialist in Seattle I've been seeing since 1991 is Dr. Eschenbach. I saw from your recent post that he didn't help you. I'm down to two treatments left, but I'm scared to try them; the shots or the surgery. The shots are what Dr. Eschenbach has been recommending for years. I was working abroad for several years and never in the States long enough to have the series. Now I'm back home, so the topic has come up again. I would sure like to find a support group in my area. I live in Kent.

Name:

alison

Email:

Date:

3/31/2002

Comment

I just wanted to let people know about a very positive experience I'm currently having with Dr. Glazer. I was diagnosed with vulvar vestibulitis about 3 months ago. I was given 3 suggestions re: treatment and decided that biofeedback was the best place to start. I first met with Dr. Glazer in January to find out if I'd even be a fit for biofeedback therapy. I was thrilled to find out that I was, because not only did it validate for me all the pain I had been feeling, but it also meant that I now had a treatment to focus on. I am happy to say that 2 months later I am well on my way to feeling better. I just had another appt. with Dr. Glazer and he agreed I'm making great progress. I understand biofeedback may not be a fit for everyone, but I wanted to share my success story in the hopes that more women will give it a try. I truly believe that I will eventually be pain free.

Name:

Kendra McClure

Email:

klmcclure21@hotmail.com

Date:

3/31/2002

Comment

I cried my eyes out when I first read this website for vulvodynia. Finally I thought I know what is wrong with me. Right after I had my daughter I had multiple yeast infections and finally the doctors told me that besides some reddness they saw nothing wrong with me. My relationship began to suffer because I couldn't have sex. My partner even made the comment that he felt like he was raping me. Then I read about vulvodynia in a magazine and looked up on the Internet. Now I know that there is hope.

Name:

susan

Email:

Date:

3/31/2002

Comment

Hi Heather:

I just read your entry in the Vulvodynia guestbook and wanted to let you know that you are 100 % in assuming that your anti-arthritis meds worked for your vulva pain.

I have tried on several occasions to report these findings to the other contributors on this site, but I guess they decided that my particular case did not apply to their situation.

My doctor (Dr. William Ledger at NY / Weill Cornell Hospital) confirmed our findings with a genetic study. For your information, you and I have a polymorphism called INTERLEUKIN 1 RECEPTOR ANTAGONIST POLYMORPHISM.

In addition to Celebrex and Vioxx, we have also found another med (actually, it's natural) that is less likely to cause problems further down the road from overuse. It's called SUMA, and it is also an anti-inflammatory. I take it 3 times a day (morning, noon, night) during rare flare-ups (I used to have daily, intense pain before getting help) and it works like a charm. It can be found at GNC. I also just recommended it to my mother whose knees are arthritic. She just started taking it so it's hard to tell if it will work for her or not. Sometimes it takes a couple of weeks for it to kick in.

Dr. Ledger is currently doing another study with his vulvodynia patients which basically consists of them taking the SUMA and him checking their blood levels once a week. So far a number of the patients are feeling great........some had not had sex in YEARS and are now back to a wonderful sex life.

For me, I've had my pain under control for almost 2 years, but every once in awhile I have a set-back. For instance, I recently miscarried baby #1 and had a flare-up after the D&C. 5 days later I was pain free again after taking the SUMA.

Not all people with vulvodynia have the gene, but we suspect that many do. This disease does have other causes, which makes treatment for some a great mystery. Luckily you and I have identified our problem, hpoefully others will identify theres if it is not the same.

I am so glad you figured this out on your own. I was SO HAPPY to read your entry, as I have not been on this site for months due to my frustration level. I really thought more people could benefit from my reports and I was disappointed when there wasn't any interest.

May I ask if you have children?

Cordially, Susan

PS: Be careful of meds containing propylene glycol. Dr. and I have also figured out that most vulvodynia patients are sensitive to this ingredient for some reason.

Name:

D.

Email:

Date:

4/1/2002

Comment

Susan,

I want to thank you for returning every so often to let people know what Dr. Ledger is up to. Because of your entries, I went to see Ledger to be tested for the gene. It turns out that I tested negative for the gene ( I did not know whether to be sad or glad), but I am so excited that his research could help so many women who do have it. Since then I have been trying to persuade as many women as I can to go visit him in NY. He is a wonderful, kind, humane doctor, and I believe every woman should go see him to see whether he can help. Thanks Susan!

Name:

Anne

Email:

Date:

4/1/2002

Comment

For Susan:

Hello, just read your entry and an interested in the SUMA that you speak of. I take N-Acetyl Glucosamine and have felt much better since I have taken it. I often wondered if arthritis,body aches, joint aches etc... was part of my vulvadynia.

I find that the low oxalate diet and LOTS of water helps.

Will wait to hear from you. Many thanks!

Name:

Anne

Email:

Date:

4/1/2002

Comment

For Susan:

Hello, just read your entry and an interested in the SUMA that you speak of. I take N-Acetyl Glucosamine and have felt much better since I have taken it. I often wondered if arthritis,body aches, joint aches etc... was part of my vulvadynia.

I find that the low oxalate diet and LOTS of water helps.

Will wait to hear from you. Many thanks!

Name:

Lisa

Email:

lily@rivernet.com.au

Date:

4/2/2002

Comment

Hi just wondering if theres any Australian sufferers out there with pudendal neuralgia. Specifically I'm interested in what the symptoms feel like. I feel like theres a brick resting on the right had wall of my vagina & bowel and am wondering if this is referring pain to my vulva. I would also like to know where/how you got treatment.

Name:

Email:

Date:

4/2/2002

Comment

Can I have my Doctor test me for the gen you were referring to? the INTERLEUKIN 1 RECEPTOR ANTAGONIST POLYMORPHISM.

i have an appointment next week, to follow up on my progress... i'm gonna lay down the law- i'm gonna ask if she knows anything about VV at all- and if not, i'm gonna make her refer me to a specialist.

i live in Louisville Kentucky- we have a million hospitals. there has to be atleast one dr that has some experience with this?

why do dr's "try" things all the time- why don't they just admit when they don't know what else to do? or, if i were the dr with a patient like me- i would research myself... but thats me.

i was telling my husband that i could probably becme a specialist in this area- i haven't been to school, but i know all the med jargon- and i have the experience (unfortunatly).

i'll stop whining. i hope everyone is feeling good... and if not yet- i hope you do soon.

heather

Name:

Leanne

Email:

lfhstarr@aol.com

Date:

4/3/2002

Comment

I wrote previously on this website. I had vulvadynia for 3 years until treated with alpha interferon which somehow managed to get rid of the symptoms in time. However, I am finding that reading the many, many entries to this guest book that i notice alot of people are stating that it started with a yeast infection. I had only one, the one that set it off. I used Monistat 1 cream and ended up in that horrific 3 year nightmare. I was just curious to know how many others used this product and had this occur to them. Are any of you fully recovered? I have been pain free for 7 years, but you never forget. i wish all of you the very best that are suffering right now and pray every night that this disease never comes back and they find a cure to help each and every woman out there who goes thru this. please feel free to contact me directly if desired. Thanks & God Bless

Name:

M

Email:

Date:

4/4/2002

Comment

Thanks Leanne -

I too had used a dose of Monisat One at the onset of my problems.

M. :-)

Name:

B. Meredith

Email:

bmerf2001@yahoo.com

Date:

4/4/2002

Comment

Hi,

I'd be interested in corresponding with anyone who has lichen schlerosis and has had a baby. I currently use testosterone cream, but my doctor said that, if I'm trying to conceive, I should not use it. I tried that just one day, and the pain became worse and my skin already began to fuse again. Any hints or personal experiences would be appreciated.

Thanks,

B. Meredith

Name:

Email:

Date:

4/5/2002

Comment

Was reading awhile back how one woman wrote about feeling like she was an alien, living in a body that was not her own, because she just had no control over how it felt, the pain, how secret it is, no one can know where you hurt, etc... I have to say I too felt like that, and still do. I can't seem to relate to what "normal" women relate to anymore. My life is anything but "normal". Yes, I work at a job - which I hate because the people are horrific, and I wonder why they don't have VV. They're so nasty and unpleasant to me all the time. Or is it me because I've just been so overwhelmed with pain for what seems like my entire life. Lord knows I try my best. I support myself - hell if anyone so much as bought me a pair of socks I'd keel over - let alone these women getting cars, jewelry, vacations. I know I'm special too, but only in a bad way. I feel like I'm here to observe, not live unless you call living with VV "living". The pain gets bad but most of the time its just there, like dark clouds surrounding you all the time. You know something is not right. I'm proud of myself that so far this year I've spent no money on doctors trying to find out whats "wrong" with me. But a lot has to be said about not just the physical pain which is enough, but of the psychological pain which compounds your psyche even more. Anti-depressants aren't the answer as far as I'm concerned. Too many other side effects. If they help someone else - great - happy for them, but its not for me. So I observe others living life - with families of their own, children, jobs they enjoy, social lives, eating whatever they please at dinner and not worrying about oxalates and yeast and whatever other nonsense exists for us "special" women. I'm very jealous but I don't outwardly show it. I hope in my next life its better than this one.

Name:

Frank B.

Email:

Date:

4/5/2002

Comment

Regarding the last post:Your post was very sincere, sure would be nice to have kind and compassionate folks in our lives. I don't know your pain but I do know that unless a person is suffering as you are or is very close to someone who is there isn't much caring extended. I have suffered for years with stomach pain and my wife who loves me has a stomach like a rock, the lady never had tummy ache. She cares because of our love but she does not really understand the hell I endure. PLenty of folks walking around dealing with pain in one form or another, women who suffer with vulvodynia have it bad because of the area of pain and our society. We still don't openly talk about itand that's a problem. People have to know what is going on in order to have feelings for your plight. Maybe someday soon the walls will come down and there will be better understanding. Best of luck.

Name:

Tamira

Email:

sunahgirl@aol.com

Date:

4/6/2002

Comment

Hi! I have written before but not much. I have vulvodynia. I've had it as long as I can remember. I am 21. My gynecologist thinks I have it because of extensive scar tissue in the vagina and on the vulva. I go to a holistic biofeedback therapist. I receive cranio-sacral therapy and acupressure. I also have noticed a decrease in everyday pain by wearing my underwear inside out. I still have pain when you touch it though. Anyway I am having to go now so I will write more later. Bye.

Name:

heather db

Email:

HADeBris@aol.com

Date:

4/6/2002

Comment

i was wondrin' if everyone could contribute any other medical problems they have (if any).

especially anything chronic, or any syndromes. and if you know what caused your VV to start, put that also.

and write even if you don't have anything other probs.

i've been researching, and i think i might be on to something, so tell me anything you think may be important.^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

I have the vulvodynia, and also Hypo-Thyroidism. I have very minor depression, but i think that stems from both conditiond that i stated above.

i have had VV since i was (atleast) 15, but it was very spuratic (sp?). it didn't get severe, and effect me EVERYDAY until dec of 2000, after i recieved the Depo-Provera Shot. and although i discontinued the shot, the pain is still with me now.

heather db

Name:

Jennifer

Email:

Date:

4/8/2002

Comment

To the woman who posted right before Frank....I think you might benefit from contacting a local chapter of the Chronic Pain Association, or is it society, cannot remember. Anyway, years ago when I was in pain all of the time I had contacted them, and the woman I spoke with was very kind, and I will never forget what she said to me..."I know how it is everyone looks at you and you look fine, young, smiling, working, but they have no idea what you suffer every minute of every day, and how by the time you get home at night you break down from covering it up all day." I realized that only a chronic pain sufferer, understands a chronic pain sufferer. You talked about how everyone else has wonderful lives, well when the world looks at you, they see a woman who takes care of herself, does what she wants...when you see others you do not necessarily see what is really there either.

I am not trying to say that you did not get a raw deal--vulvodynia sucks! I don't know how bad or how constant your pain is, but just know that almost nobody gets through life without some crap, there are lots of people who know your pain, and there are people who care.

Can you look for another job, so at least you get away from those horrible people at work?

Name:

Diana

Email:

Date:

4/8/2002

Comment

Heather,I also suffer with Fibromyalgia. I am perimenopausal so I believe hormones also play a part in my vvd pain. Let us know what your theory is.

Name:

Lorretta J. Wise

Email:

shadow@pacifier.com

Date:

4/8/2002

Comment

Basically my gynecologist says he has no idea why I am in pain. This is after a hysterectomy and bladder prolapse repair.Now, he suggests I consult another doctor, there is nothing more he can do.

Name:

Email:

Date:

4/9/2002

Comment

To Lorretta: There are plenty of reasons you could be having pain. Unlike many doctors yours was honest enough to level with you instead of suggesting medication after medication. Before you commit to an appointment ask if the Dr. treats vulvodynia. They work for you.. Best of luck.

Name:

maria

Email:

maria_costantini

Date:

4/9/2002

Comment

I would like to be able to get on the chat line...how do I become a member?

Name:

Maria Witz

Email:

sunmo_2000@yahoo.com

Date:

4/9/2002

Comment

I would like to share a web site that I put together related to my experience with vulvadynia. It needs a bit of fixing up, but at the moment it still has enough information on it for women that are looking for therapy options. http://www.webspawner.com/users/matadordejerez/

Please let me know if there is a problem with the site --thank you

Name:

KR

Email:

Date:

4/10/2002

Comment

To Leanne 04/03/02: I am one of the ones in the "Monistat" category -- 4 1/2 years ago, I had just finished a round of antibiotics for a UTI -- developed a "funny, irritated, chafed" feeling internally -- thought it must be a yeast infection -- used OTC Monistat -- and it was downhill from there. Today, I am 90-95% recovered (I have posted previously what has helped me), but I still have occasional flareups. It certainly makes one wonder what's going on and if there is a connection with the Monistat.

Name:

Frank B.

Email:

Date:

4/10/2002

Comment

Regarding the Monistat Theory: My wife fits the general mold of Women with vulvodynia. Antibiotic use, "The Pill" and other birth control use, repeated yeast flare-ups and urinary tract infections. You can draw many similarities and theories and for some maybe there is a connection but I still feel these just may be coincidence and there is something else going on. Real scientific research should be done to get to the cause or causes. How much unnecessary medicine will you be encouraged to ingest or apply? I think I understand the frequent yeast problems better after reading a article on Medscape. In my wife's case I believe frequent love making caused a buffering effect and upset the Ph balance. The article talked of this and it made sense. All the other things took place over a eighteen year , three pregnancy period. Why didn't the skin thin out sooner? We have been reassured hormones are not the cause although she may be nearing menapause. You can try and make a connection, blame medicine use, a lover, genetics but how can you really be sure? Best of luck trying to figure out this puzzle..

Name:

ds

Email:

yteews01@hotmail.com

Date:

4/10/2002

Comment

To the woman who made an entry on 4/5 before Frank B.'s response. I would like to know if you would like to email me on a personal basis. I would really like to talk with you. I've found no cure yet and suffer dayin and day out. I just felt like it would be nice to converse with you. My email address is above. I hope to hear from you. I will start if you just want to let me know that you would like to write.

Name:

Dee

Email:

Date:

4/10/2002

Comment

Does anyone have really bad pain mostly from when they sit? If so, have you been given any causes? I swear if I could stand all the time I would be 90% better! Also does anyone know how to tell if either the Bartholin Glands, Skenes Glands or Vestibular Glands may be the culprit if swelling is only sometimes? How can these be checked if when one is lying down for an examination they appear normal? Any information that anyone has would be greatly appreciated.

Name:

debbi

Email:

debbibaron@hotmail.com

Date:

4/10/2002

Comment

After much pain and discomfort, I was lucky to find a doctor who specializes in gynological disorders and he had me in biofeedback and a specialized physical therapy that worked on my pelvic floor muscles! it does really work! Now I feel so much better and like I have my life back!!!

Name:

laurel

Email:

Date:

4/10/2002

Comment

Hello friends. Just wanted to keep you up to par on my 3rd visit with Dr Davis. I am still taking estrogen, and the exam shows that the tissue is healing, however, I do have painful days, with flareups, but less frequent. Also, I have proctitis along with the vulvar issue. Some of you may want to ask for a rectal exam if they show signs of rectal or buttock pain. Sitting makes things worse. The proctitis goes up alot further than we thought. I am being treated with anusol suppositories. Dr Davis says that the vulvar pain and the proctitis are definitely related lying on the same nerve, so it is a must to clear up both issues. For those who have any type of rectal pain, please get it checked. I do have a problem with constipation, but I thought it was due to the IBS. When he did the rectal, he saw that the swelling way up inside (my abdomen swells in a flare up, I had thought it was my bladder but it must be the colon) is causing the stool to get blocked, that I am not emptying all the way. That in turn, is causing the stool to push on the vaginal wall, flaring me up. I had always thought that was the case, but now am sure. Anyway, I wont take up space, but I will write if there are any new developments. I just wanted to add one more thing. Cutting salt intake seems to reduce pain for me. If one is flaring up with ham, bacon, cheese, foods that are considered low in oxalate, it may be the high amounts of sodium. I think it is somehow burning the skin, not disimilar to salt to a wound. Eating small amounts of those foods may alleviate pain, try it. Same with high sodium drinks and other foods. Best of health to all, laurel

Name:

Leanne

Email:

lfhstarr@aol.com

Date:

4/10/2002

Comment

TO: kr.....I was just wondering If you could tell me where to look for your past posted information? Also do you ever have an occasional flare up?

To:Frank B...I appreciate the information that you shared with us, but I have hundred of women emailing me since i posted the 4/3/02 message that share with me that there first yeast infection ever set off vvs with one dosage of monistat.. I think it is important for us all to know if this is the case for 100's of women, because something needs to be brought to this companys attention. As a matter of fact I am currently working to get some national coverage on this matter to help all women out there. There is not enough research and thousands suffering and no one talks about it. ITs like a death sentence. You burn in hell 24/7 and more than 1/2 the world doesnt know whats going on because your afraid to talk about it. You hardly read about it. And I cant remember the last time I saw a TV news show with some coverage on it...Or whats being done about it. I think the only people that will make a difference is us...the women....whom suffer or have suffered unbelievably. I am better today only had one flare up in 5 years....but the only people whom can make a difference is us. And I for one plan on taking some action until they do something about this. Or at least try. God Bless all the women in this condition...Lets get something done....

Name:

Frank B.

Email:

Date:

4/10/2002

Comment

To Leanne: I am sorry if I sounded negative and I think I did. I applaud your efforts and sincerely hope you can get some exposure for this terrible illness. My best to you and all who suffer.

Name:

Kathy

Email:

Kpnewman@aol.com

Date:

4/10/2002

Comment

To Dee with the entry on 4/10/02. I don't know about the swelling of any of the glands in the vulva area, but do you by any chance have inflammed vericose veins? I have had to have one surgically "tied off", and a couple of others injected with a solution by a dermatologist to shut them down. I also agree on the lying down to see what's really happening and how can anything be told in that position, but to have to stand up to be examined (which I have thought about), I just have to hold on to some type of modesty, as if there is any left after this disease!

Name:

KR

Email:

Date:

4/11/2002

Comment

To Leanne 04/10/02: Yes, I do still have occasional flareups, but for the most part my symptoms are under control. My posting with the most detail on what has helped me is in Guestbook 15 dated 02/22/01.

Name:

Dee

Email:

Date:

4/11/2002

Comment

Kathy, Thanks for your response. How did you find out you had vericose veins? This had been mentioned to me by a doctor way back but nothing has ever been said that I do. There are times when I do have a vein on each side that flares out when I am swollen. Did the treatment help? Was the treatment painful? Any info would be greatly appreciated.

Name:

Howard I. Glazer Ph.D.

Email:

DrGlazer@att.net

Date:

4/17/2002

Comment

Guestbook visitors. The host server for the vulvodynia.com website has recently made some major upgrades and we lost the guestbook briefly. We have now returned to full operation.Thanks for your continued participation in the vulvodynia.com website

Name:

kristin

Email:

Date:

4/17/2002

Comment

Name:

kristin

Email:

krissy42042@aol.com

Date:

4/17/2002

Comment

i haven't written in a while...thats because i was trying the estrace cream and was hoping i would improve. I used it for about 2 weeks, then one day i forgot to and i felt a little better. So i thought it was working...anyways after the next time i used it the pain was gone it sucks really bad. i'm just trying vitamin e oil a few times a day...besides that i'm going to see Dr. stewart in mass. and don't want to be using something she didnt prescribe....has anyone been to her?? anyways i'm not going untl may17 so i have another whole month to get through. does anyone know if the wild yam does anything....i just need something to releive the pain. I have school every day i have to sit for like an hour and a half each class it really really hurts and sucks alot. Anyways anyone with any info can email me or post it here .....bye

Name:

kristin

Email:

Date:

4/17/2002

Comment

i meant after i used it again the pain returned....i wish it was gone

Name:

Frank B.

Email:

Date:

4/17/2002

Comment

Name:

Frank B.

Email:

Date:

4/17/2002

Comment

To Kristin: Sorry the meds aren't working. I read a few guestbooks back that some ladies were actually using frozen bags of peas to get relief , or course soft ice pacts discretely placed may do the job. Try to avoid the meds without first having the dr. justify their necessity. In other words why take Estrace a estrogen cream if you have no deficiency? The doctors are grabbing at straws. Best of luck and relief..

Name:

Missy

Email:

Date:

4/18/2002

Comment

Krissy,

I used Estrace and it made me burn terribly. I can tolerateDesitin. Even vitamin e oil made me burn. Try using the Desitin. I forgot to include this when I e-mailed you.

Name:

Missy

Email:

Date:

4/18/2002

Comment

Krissy,

I used Estrace and it made me burn terribly. I can tolerateDesitin. Even vitamin e oil made me burn. Try using the Desitin. I forgot to include this when I e-mailed you.

Name:

D.Marie

Email:

Date:

4/18/2002

Comment

Has anyone had a hysterectomy whereby the cervix was also removed surgically? If so, have you had any problemsafter the surgery with this area hurting. I understand thatthis can happen with some patients and was wonderingabout it. Please post if you have had this problem, or if you had no cervix removed with no problems after surgery. Thanks.

Name:

M.

Email:

Date:

4/18/2002

Comment

To Frank:

Using Estrace has NOTHING to to with a hormone deficiency. You keep stating that, and it may be putting some women off to a treatment that may help them. Estrace and Ortho-Dianestrol (sp?) has been very helpful to some women with this problem, and there are even some who feel it's cured them completely. You should talk to a good doctor who knows the relationship between Estrace and Vulvodynia.

Name:

Frank B.

Email:

Date:

4/18/2002

Comment

To M: The reason I post is to raise awareness and hopefully prevent some ladies from using unnecessary medications. I'm not a know it all or a wise guy. I have spoken to several doctors, gyns and an endocrinologist. Some dance around an answers to a direct questions others swear cures depending on the medication used. One gyno said she could rebuild my wife's vagina using a combination of Estrace, testosterone and locoid ointments. A bunch of empty promises. The endcrinologist seemed the most honest he said if your wife is menstruating normally and has a good result to a vaginal cell test for estrogen in the wall lining then there is no point to using steroids. That is from a doctor not me. Maybe the many women helped had valid deficiencies. My hope is that the women who suffer and there are way too many will pressure their doctors to do the necessary tests to determine a educated course of treatment. Get mad real mad but get mad at the doctors who suggest the pain is in your head. Get mad at the experts who put you on antidepressants or guess at a dozen or so creams, injections or surgical procedures. I'm mad and disapppointed by the medical industry so should you. I'm a husband, father concerned blue collar guy sick of the treatment by guess work approach. Join in and be heard. Remember for all those helped by estrace many are hurt!!

Name:

laurel

Email:

Date:

4/18/2002

Comment

For M: I was prescribed Estrace 2 years ago, and have used it since. It has done nothing whatsoever for the pain, but the skin is a lot smoother. I do know that long term use of steroids can eventually thin the skin, so the smallest of amounts is suggested. Also, the estrace that I have is compounded so that the propylene glycol was eliminated, making for a less burning application. That does not mean one wont see positve effects from the cream, its just that I have had none at all. I do use the cream still but i dont show any real positive effects from it. And I am at 31 yrs of age estrogen depleted. I take it orally and have yet to see a period in 2 yrs. But, for those it does help, Dr Davis suggests applying it up inside as well, which I do. regards, laurel

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/18/2002

Comment

Like so many of you, I am a young (26) woman who has suffered with vestibulitis/vulvodynia far too long. It first started when I got married 5 years ago. I must have gone to at least 20 doctors since then, and they all were unable to help me. I've tried all the recommended remedies: low-oxalate diet, calcium citrate, steroid creams, etc. Finally, just yesterday I asked my primary care physician for a prescription for Estrace cream. After reading so many web postings about Estrace, I knew I had to try it, but I was afraid no doctor would give it to me since I'm pre-menopausal. Thank God my doctor was different! She agreed right away that I was a great candidate for Estrace. I just filled my prescription yesterday and started using the cream today, sparingly at first of course, and thank God, there was no burning with that initial application. I am so encouraged by all the stories of brave women that I come across on the internet. Thanks again for sharing your experiences with us! Please, anyone, let me know of any other "miracles" you've encountered in your battle with vestibulitis/vulvodynia. God bless you all!

Name:

M.

Email:

Date:

4/18/2002

Comment

Frank -

Just for the record - no doctor has EVER told me this was in my head.

There is a woman who posted on a site called "vulvodynia support" who I have been in contact with and she swears that Estrace cream saved her life - and yes she had the 3rd and 14th day standard hormore blood work done and it was normal. There is a woman who posted in this very guest book who had interferon injections and is now just fine. You basicaly just listed most of the possible treatments, and then stated they don't work. I am truly sorry they didn't work for your wife - but it's not helpful for anyone here when someone posts that there is really just nothing for any of us to do to get better!

If you're looking for one right answer for the cure for everyone with this problem - it's not going to happen. And if a woman is not willing to try different things - she probably won't be successful in getting rid of the problem.

What perminent (sp?) damage has Estrace, Elavil, or the likes actually done to anyone?? At worst, it doesn't work. And just for the record, some of these treatments didn't work for me either, but I would NEVER tell someone else not to try, because it may be the right thing for them!

For everyone blaming the meds they have tried for making them worse (and I don't just mean a flare-up) - has anyone thought that the meds they are using are simply not helping - and the vulvodynia is just progressively getting worse on its own???

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/18/2002

Comment

More Estrace questions...

First, will applying Estrace to the vestibule area below the vagina and between the inner labia (my worst trouble spots) cause yeast infections? I would guess not since many women are told to insert Estrace into their vaginas. I've just had bad luck with getting yeast infections from applying any kind of ointment to my genital skin.

Second, how will I be able to tell the difference between the early side effects of Estrace (itching, burning) and a yeast infection? I don't want to mistake normal side effects for something worse and end up giving up on a great med!

Third, is it just me, or is there a really big correlation between being fair-skinned/fair-haired and having vestibulitis/vulvodynia? Maybe our skin is thinner to begin with? I've always had eczema throughout my young life and itchy spots of dry skin on my hands/arms/legs. Little did I know it would eventually affect "down there"!

God help us all!

Name:

M

Email:

Date:

4/18/2002

Comment

Dana:

Use the browser "Google" and go to a site called vulvodynia support. Look at the "Call to Action" guestbook (I think it's guestbook three) and read the postings from Dee Troll. She had a complete recovery using Estrace, but it was slow-going. You might find her information helpful. Best of luck to you!

And please - to everyone - when something does work for you, don't forget about the rest of us. Always post the details of what has been successful for you. In addition, when you do get help, contact ALL of the doctors you have seen and tell them what finally worked for you. There are actually many small studies going on in numerous university hospitals all over the country - and sharing your information IS the way to be heard!!

Name:

Frank B.

Email:

Date:

4/18/2002

Comment

To M: I hope this doesn't seem like a battle of right and wrong, I think we both want ladies who are suffering to get relief. I just would like some real research instead of doctors guessing. You were lucky in a way to have been treated by a compassionate dr. I have read of many women ignored and insulted throughout these guestbooks. I have stated before it is my opinion there are many different causes for the many symptoms of " Vulvodynia" so it would make sense that some treatments will provide relief and that's a great thing. I'm not suggesting to give up all hope and suffer in silence, to the contrary I would like to see all women and their mates involved, proactive ,questioning their doctors and educating themselves. I do disagree that medication after medication is harmless, and while I can't provide hard data to back that up I fear women are being used as test subjects in this instance. Until the medical community steps up and takes a real close look at this condition and all its complications women will continue to be over medicated. One more thing elivil has caused more depression than it's cured by weight gain and psycological side affects. We don't have all the facts of all the many women driven into depression by this illness and the medications given to relieve it. Sure would be nice if someone would compile them. In closing I will let you have the last post as I did not intend to grand stand here I have nothing to gain and did not mean to insult anyone. We have to be our own health advocates for ourselves and our loved ones. My best to you all.

Name:

Donna

Email:

Date:

4/19/2002

Comment

To Laurel:

Hi Laurel, just wanted to ask a question about the Estracecream. You said it made your skin smoother. Was yourskin rough or bumpy? Could you describe the conditionof your skin before it improved. I would also have it compounded with out the glycol in it so that it would not burn.Also, have you heard from Lynn? I that shehasn't posted in a long time and was wondering if she was doing well. My best to all for good health.

Name:

Dee

Email:

Date:

4/19/2002

Comment

There seems to be some confusion about Etrace cream. Many are saying it contains steriods which is the last thing that I want to use. They caused me misery when I was using them. Anyway, I asked Dr. Glazer if it contained steriods and he said that it did not. It did not help me except I had to stop using it to go on a 2 week regime of suppositories for a yeast infection and I was told that I could still attempt "relations". Anyway, the only difference I found without it was that upon entrance my skin had that stretching feeling like it was going to tear (but never has, "yet") that it had before I used the Etrace. While on the Etrace I did not have this feeling a couple of times, but it could be due to the biofeedback, I really can't tell. I don't feel the Etrace has done anything for me other than that. I still swell and have "very sore" skin. I thought (hoped) that Etrace would be the answer to my prayers, but it wasn't. God bless those of you it does help. I used the regular version but many of you should consider the mild version made without that ingredient that irritates many of us with this condition.

Name:

LIZ MACK

Email:

Date:

4/19/2002

Comment

I HAVE BEEN READING ALL THESE ENTRIES AND I AM RIGHT THERE WITH THE REST OF YALL. I HAVE HAD VESTIBULITIS FOR 16 YEARS WITH NO RELIEF. IT ALL STARTED WHEN I HAD A COMPLETE HYSTERECTOMY AT AGE 35 DUE TO ENDOMETRIOSIS. THAT WAS THE BEGINNING OF MY "HELL". MY HUSBAND AND I NEVER HAD A PROBLEM WITH SEX BEFORE THAT. ALMOST IMMEDIATELY AFTER WE WERE ABLE TO HAVE SEX AGAIN I WOULD RIP AND TEAR AND I STARTED HAVING THESE TWO RED SPOTS AT ABOUT 5 AND 7 O'CLOCK. I WOULD ALSO GET URINARY TRACT INFECTIONS AFTER SEX WHICH I NEVER HAD BEFORE. WE TRIED ESTROGEN CREAM, TESTOSTERONE CREAM, Z AND Y PLASTY SURGERY, STEROID SHOTS, STEROID CREAMS, LOW OXILATE DIETS, CALCIUM CITRATE, ALOE VERA GEL, MANY BIOPSIES, AND FINALLY A VESTIBULECTOMY SURGERY WHICH WAS THE WORSE MOVE OF ALL. THAT WAS 12 YEARS AGO. SEX IS SO PAINFUL WE CANNOT EVEN HAVE IT. THAT SURGERY MADE THE SKIN AND MUSCLES SO TIGHT THAT IT TEARS AND THE MUSCLES CAUSE A REALLY DEEP PAIN. HE REMOVED THE HYMENIAL RING AND NOW I AM SO SMALL. MY NEW DR ORDERED ME DILATORS BUT IT IS TOO PAINFUL TO EVEN INSERT 1 FINGER MORELESS A DILATOR. NOW I HAVE A BARTHOLINS CYST. I HAVE BEEN TO SO MANY DRS. AND I USUALLY HEAR EVENTUALLY THERE ISN'T ANYTHING ELSE I CAN DO FOR YOU. I DON'T HAVE YEAST INFECTIONS AND HAVEN'T SINCE I WAS IN MY 20'S. I AM NOW 50. I DID HAVE VAGINAL WARTS IN MY 20'S. THE SKIN IS VERY THIN DUE TO ESTROGEN LOSS EVEN THO I STILL USE THE CREAM. I AM SCHEDULED FOR SURGERY MAY 6 TO REMOVE ONE OF MY BARTHOLINS GLANDS. WHILE HE IS IN THERE HE WILL TAKE A LOOK AT THE MUSCLE AND SEE ABOUT LOOSENING IT UP. NOT SURE IF THE GLAND IS CAUSING THE MUSCLE PAIN OR NOT. HE WANTS TO DO ANOTHER VESTIBULECTOMY WHICH I HAVEN'T DECIDED WHETHER I WANT TO DO THAT AGAIN. I THINK TOO MUCH SURGERY CAUSES JUST AS MANY PROBLEMS AS THE VESTIBULITIS ITSELF. I DON'T HAVE ANY THING TO REALLY OFFER RELIEF WISE. I THINK WE HAVE TO BE REALLY PROACTIVE WHEN IT COMES TO THE DECISIONS WE MAKE FROM THE DRS. DIAGNOSISES AND TREATMENTS. DON'T ALLOW THEM TO DO JUST WHATEVER THEY COME UP WITH. SOMETIMES LESS IS BEST. GOOD LUCK TO ALL OUT THERE. IF I HAVE SUCCESS WITH THIS LATEST SURGERY I WILL EMAIL BACK. I WILL KEEP READING AND I AM NOT LEAVING MY EMAIL BECAUSE THIS IS A WORK COMPUTER AND I CAN'T BE LOADED DOWN WITH PERSONAL EMAILS. IF ANYONE WOULD LIKE TO ASK ME SOMETHING JUST POST IT AND I WILL RESPOND AS I AM ON HERE DAILY!

Name:

M.

Email:

Date:

4/19/2002

Comment

Thanks Dee for pointing out that Estrace cream and steroids are two completely different medicines. I missed that when I responded to Frank's post.

Name:

LIZ MACK

Email:

Date:

4/19/2002

Comment

IDID LEAVE A FEW THINGS OUT. THE SKIN IS ALWAYS REALLY RED AND RAW AND EVEN TO WIPE CAN MAKE IT BLEED. ALSO, IT BURNS TO TOUCH IT AND IF YOU PULL ON THE SKIN IN REALLY BURNS. I HAVE ALSO BEEN DIAGNOSED WITH ECZEMA ON MY NECK AND AROUND THE HAIRLINE ON MY FACE. THIS ITCHES REALLY BAD AND BURNS IF I JUST RUB MY FINGER DOWN MY NECK AND FEELS LIKE IT COULD RIP. THESE ARE SOME OF THE SAME SYMPTOMS I HAVE FROM VESTIBULITIS EXCEPT I HAVE NO VAGINAL ITCHING. I ALSO WANT TO SAY THAT I HAVE THE MOST WONDERFUL HUSBAND TO GO THROUGH ALL THIS WITH ME AND PUT UP WITH ALL THIS AND LACK OF INTERCOURSE!!!!! WE HAVE BEEN MARRIED 28 YEARS. I KNOW MANY COUPLES THAT WOULDN'T BE ABLE TO SURVIVE THE SITUATION. IT ISN'T EASY AS SEX IS A WONDERFUL GIFT FROM GOD AND CERTAINLY MAKES YOU HAPPIER AS A COUPLE!!! JUST THOUGHT I WOULD ADD THESE THOUGHTS. I THINK ALL THE SYMPTOMS AND INFO WE CAN ALL GIVE EACH OTHER WILL SURELY HELP.

Name:

Kathy

Email:

Kpnewman54@aol.com

Date:

4/19/2002

Comment

Dee, regarding your question to me about varicose veins on April 11th....I answered your question that day, but the guestbook sight was down and it did not go through. So here it goes again.....hopefully! My Gynecologist told me that is what it was after I described how it felt, (throbbing, swollen, and it felt like raised ridge in the area). It was on the left side of the vulva. That one he tied off during surgery for another problem at the U shape at the bottom of the vagina. It worked, as far as I don't have the pain or any sign of it anymore and that was done in 1996. The next year I had two more to come in that area, one at the top of the vulva area and the other on the right side about midway. He sent me to the dermatologist the have the injections for those. That doctor then took a syringe filled with some kind of saline type medicine and injected each varicose vein. It is called Scleretherapy (sp?). As a plus side to each visit he would use the remaining medicine and inject the unsightly spider veins in both of my legs. On the average of each visit I would have between 25 and 27 injections. I went about every 3 to 4 weeks for six months. Now, he only had to inject the vulva area three times to cure that, but since he was doing my legs too, and to keep a check on the vulva area, he continued to see me for that long. It feels like a pinch when the needle is inserted and the medicine goes in, very quickly over. By the time he would get to the 20th or 21st injection, my eyes would tear up but I just closed my eyes and got through it knowing it would soon be over and that it was helping so very much. My vulva area, knock on wood, does not have any more varicose veins at this time, and my legs still look really good, but if I had to do it all over again....I'd be there today! It was definitely worth it. My insurance, covered it except for the office co-pay, because normally that procedure is for "cosmetic beauty", but face it, cosmetics is not what I was worried about in the vulva. Then too, I had pain in the vulva and my legs because of the veins and that is how the doctor and the insurance company deemed it necessary. Good luck!

Name:

Kathy

Email:

Kpnewman54@aol.com

Date:

4/19/2002

Comment

To D. Marie on 4-18. First of all I am sorry to take up so much space today in my comments, but after 11 years of having Vulvodynia, I've had a lot done to me. Last year I had a complete hysterectomy. Yes, the cervix was removed also. When I went back for my second post-op visit, I had done as I was told by the doctor and had tried to have sex, with my husband of course, and I did, but whoa! Not to gross anyone out but I bled...alot. It was scary! So I went to the doctor and he gave me a presciption for some cream, I'm sorry I don't remember what it was. Well, a month later it still had not healed, so I went back and he said that this happens sometimes. That where the tissue was pulled over to make a new "imitation cervix", the stitches did not heal up properly and and excess tissue formed. He then took a long scapel-looking thing and, get this, he used no numbing medicine, and then he cut out that tissue! I said some words that I hoped burned his ears, cause that hurt soooooo bad. It worked though and I found out later that this occurs alot and that is how these doctors take care of it!!!!!!! Sorry Frank if you're reading, but Castration popped into my mind after he finished the procedure.

Name:

Frank B.

Email:

Date:

4/19/2002

Comment

To Kathy: No offense taken, I'd like to see a few doctors suffer at their own hands. I've had a life of abdominal surgeries and many times deep abdominal catheters and drains would literally be yanked out without any numbing. When I was twenty nine I had major surgery and two drain tubes were yanked from my groin area, as I layed there in tears I was given some demerol. I know pain, and inconsiderate doctors and those who suffer in silence. Hope you are doing better and hope that doctor doesn't reproduce............

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/19/2002

Comment

Thanks, M. I checked out the "Call to Action" guestbooks, and they truly were a wealth of good information. I've found so many good internet site to go "hang out" and vent about this awful disease. Sometimes I read the womens' stories and just cry and cry. I think back about how long it took me to take action and get the meds I needed. Why are we so afraid to demand help? Is it because "good girls" don't complain about "down there" and suffering in silence is a virtue. Or is it because we're so heavily marketed to stuff ourselves with cream and hope for the best. Not anymore!!!! I think that until we talk to our doctors like we talk to each other in these sites, we'll never get the medical community to understand our plight. Well wishes to you all!

Name:

D. Marie

Email:

Date:

4/19/2002

Comment

To Kathy:Thanks for posting your reply so quickly. I never knew thatthey made an "imitation" cervix whereby pulling tissue overthat area. I am ignorant about this. If you had it to do overagain, would you have left your cervix alone and intact?

I will discuss this with my doctor to make sure I understandabout the removal of the cervix. It sounds terrible to me.

Thanks for replying. How are you doing today?I hope you have healed and are doing better.

Name:

Kathy

Email:

Kpnewman@aol.com

Date:

4/19/2002

Comment

To D. Marie, Yes, If I had to do it all over again, I would still want the cervix removed. That is one less part of the reproductive area that I have to worry about cancer. Of course I realize cancer can occur anywhere in the body, and I will still get yearly physicals that include a pap smear just in case the tissue that is there now would "develop something". It's just if I had known how the doctor was going to "fix" the excess of tissue there, I would have slapped him first! After the hysterectomy I was really tired for at least six months, but now I have gradually gotten my strength back and I have not had even one yeast infection since the surgery! That is an accomplishment in itself. I still have the vulvodynia, but at least the two main irritants are gone, one the monthly period for good, and two, the yeast, hopefully, wishfully for at least a while longer.

Name:

laurel

Email:

Date:

4/19/2002

Comment

For Donna: Maybe I should have explained a little better. The skin was never really bumpy per se, but my pain is really on the whole left side both on the outside and under the skin (although the area is barely red, it took 2 dr's to see an iritation if at all). I do have a "jagged" piece of skin in the area that I was born with, so maybe that makes that side more sensitive to the pain. Also, I drive a clutch and have for years, and I think repetitive motion while driving and using the break and clutch has only added to my despair (I do not drive as much now). When I say that the area feels smooth now, I think its more that when I apply the cream or wash myself during a shower, I can feel that the skin has a completely different texture to it. The only analogy I can think of is the face of someone who uses Retin A, like a smooth shiny look to it. Other than that, it hasn't done much, but my case goes way beyond the surface of the skin, and has so much to do with lack of estrogen and being raw from the vagina to the colon. I am hoping that the oral estrogen will bring me good results, but never get too positive. If anyone thinks estrace will take care of a hormone problem, it just wont. I think the estrogen helps those whose pain is more of a dermatological one, but we are all so diverse, its so hard to pinpoint! I too have been wondering about Lynn, hopefully she will see these posts and chime in. best of luck to us all, laurel

Name:

Heather DB

Email:

HADeBris@aol.com

Date:

4/20/2002

Comment

in reference to Dana's post, on the 18th.....

i would appreciate if people would respond to her comment about "fair skin/ fair hair".

i personally have a very light complextion, and have auburn hair.

could you guys also post what your hair/skin color is also? even if it is dark/dark.... atleast we would know to rule that out. Dana could be onto something... cause i know my skin is weird in general, but i never thought to connect the two. i always thought- 'that's just me- my weird self'.

Name:

SS

Email:

Date:

4/20/2002

Comment

I have a dear friend that is in terrible pain. She has had two surgeries in the last 5 years and since the last one over 2 years ago her pain has become much worse. She is now in a pain clinic and basically all they have done is give her medications to ease the pain without much help. Many of the meds make her very sick to her stomach. The Dr is now considering a morphine pump. I am not able to just stand back and watch this anymore. I assume there is nerve damage and I pray to god we can find some relief for her. I have been reading about the gene theory and am wondering if we did pick up SUMA would be ok or if this could cause more harm? What about vitamins? It breaks my heart to see her in so much pain and I feel so helpless. I have told her I would go anywhere with her to get help. But where do you start? SInce the last surgery went so bad whom do you trust. Yes there is much regret now after the surgery but it has been done and we can not turn back time. Has anyone had this surgery and made them worse? What can we do now? Please any help would be greatly appreciated and we are unsure of where to turn. Thank you.

Name:

Kathy

Email:

Kpnewman54@aol.com

Date:

4/20/2002

Comment

This is in response to the fair haired/ fair skin poll. I also have very fair skin and blonde hair. When I was born my hair was white as snow. I read the question about the fairness and called two women who live in the same county that I do and that also have this disease, and (since I have never met them personally) asked them the same question......and YES both of them are fair haired and have very fair skin!!!!!! One said the low oxylate diet has helped her 75%, but the other one said it did not help her at all and neither did it help me, but that's okay, maybe something will one day.

Name:

Jennifer

Email:

whereshome@hotmail.com

Date:

4/20/2002

Comment

Re: the poll about fair-skinned women

I am half-Japanese but I have freckles and fair skin and suffer from vvs. I live in Vancouver and once contacted a volunteer "leader" whose number I got from the Vulvar Pain Foundation and she was the first one who introduced me to that theory. She also had fair skin.

Name:

D.Marie

Email:

Date:

4/20/2002

Comment

Hi Kathy: Thanks for stating that you would have the cervix removed today if you had it to do over. I think this is the right choice for me too. I am at ease about the decision, since reading your last post. I also feel it is one less cancer to worry about.

As far as the poll is concerned, I am dark hair, dark eyes,fair skinned. I don't believe that is is only connected to light skinned, light eyes. I think it crosses over.

Take care.

Name:

Becky

Email:

bkdris@coin.heartland.net

Date:

4/20/2002

Comment

Hi everyone I haven't posted for awhile I'm doing great so far I've been on Elavil and the low oxalate diet it seems if I eat chocolate I flare up real bad.so I quit eating chocolate but I sure miss it. And as to the poll I have dark hair and fair skin. I hope the best for everyone.

Name:

LIZ MACK

Email:

Date:

4/21/2002

Comment

IN RESPONSE TO THE POLL OF HAIR AND SKIN AND EYE COLOR, I HAVE BROWN HAIR, GREEN EYES, AND MED TO FAIR SKIN. AS I SAID EARLIER I NOW HAVE ECZEMA REALLY BAD ON MY NECK WHICH LEAVES IT LOOKING REALLY RED ALL THE TIME. MY VULVA AREA SEEMS TO FLARE UP AND GET REALLY RED AND RAW AND BURN AT THE SAME TIME MY NECK DOES. I JUST WONDER IF IT IS SOMEHOW RELATED! DOES ANYONE ELSE HAVE THE SAME PROBLEM WITH THE SKIN ELSEWHERE ON THEIR BODY BESIDES THE VULVA AREA? I HAVE HAD VESTIBULITIS FOR 15 YEARS AND ECZEMA FOR ONLY ONE YEAR. LIZ

Name:

Katie

Email:

Date:

4/21/2002

Comment

Well...I've decided I can no longer take the pain and suffering of this illness any longer. I was 22 when I first got vulvodynia and I am now 35, remaining a virgin and with my only sexual experiences being at the hands of doctors with needles, scalpels and microscopes.My vuvlvodynia just came on one day out of the blue. A horrible stinging, burning and swelling of my whole vulvar and vaginal area.I have tried every treatment mentioned in the eighteen guestbooks here and then some. Doctors, specialists, psychologists, alternative medicine, faith healing...you name it. Creams, shots, surgeries, nerve blocks, drugs, drugs, drugs...everything.26 doctors in all. All with different treatments.Every day seems worse than the next. This is not about not having a sex life....it is about not having a LIFE.I feel as though I am trapped in a cage of suffering, like someone put a curling iron inside me, turned it on, and just left me there. The pain is unrelenting.I can't do anything. Ride a bike, horseback ride, go to the movies, swim, visit friends, walk, take a bath (only cold showers), and so much more. I have lost all my friends and indeed most of my family (who wants to be around someone who is sick all the time?) I don't blame them....I don't want to be around me either. In fact...this isn't me, it's just a shell of who I am...my soul died years ago.I find myself envying people in wheelchairs who simply cannot feel anything and are much more mobile than I am.I can not sit or lie down at all. I have even learned to sleep standing up but only get about a half hour at a time when my body is just too exhausted from the pain to stay awake any longer.My legs are swelling (from standing all the time) so profusely on my 73 pound frame that I look deformed somehow and they ache so bad I feel they will burst.I spend each day praying and crying in pain. Trying to will the pain away. Popping morphine pills that don't ease the pain one bit and leave me listless and depressed. I lost my career I worked so hard for and don't even go out during the day. I live on crackers and water because everything else I eat just adds to the pain. I stand watching tv or staring at my computer, with tears streaming down my face at just about every hour of the day. Then at night I just pray that God will mercifully take me.Indeed, Job was not tested a fraction as much as those with this horrible illness. I find my faith wavering as I pray for a miracle daily as there are no treatments left that can help me.I watch as they come up with all kinds of treatments and cures for other ailments....ones that aren't nearly as life-altering as vulvodynia, and wonder why we are being punished. Why is more not being done?We suffer in silence...because we are women, so who cares. I'm sick of the bandaid measures and treatments that actually do more harm than good. I don't want to spend 24 hours a day putting on creams, taking pills, eating nothing but bread and water, going to doctors and generally focusing on my vagina 24 hours a day just to get a "marginal" bit of improvement that never comes anyway.I'm tired of vomiting from pain everyday and from my eyes being swollen and my heart being broken from lost dreams and goals. I'm tired of hoping each day for a cure that never comes.This is TORTURE...pure and simple.So I have decided it is enough.No more..it is more than I can bare now.The pain consumes me daily.I pray that somehow, someway, something will be done to help the rest of you suffering with this illness. You are the world's most tortured souls...I know this. Bless you all for struggling as I did. For standing up and going on every day in the face of a world that does not care or believe in you.I can only hope that one day this illness will be recognized and brought to the forefront and that the time and research dollars will be invested to find, not simply a bandaid measure....but a cure. I wish that for all of you my friends.But for me, it is too late.I will be writing a note to my doctors and the media. In my death I will find my voice (free of embarrassment) to let people know what is happening to us. Why death is a better option.And at last I will be FREE.I will find blissful, wonderful sleep. I will be completely free of this agonizing, unstoppable pain. I will run and play and leap and dance in the heavens and I will at last be at peace. And I will smile, for the first time in 10 long years. I will be happy.God Bless you all.

Name:

Frank B.

Email:

Date:

4/21/2002

Comment

Dear Katie: Please, Please reconsider!!! I don't doubt your pain or seriousness but Please don't carry this out. Maybe there is a more workable form of pain relief, something we are not aware of. Seek out pain management instead of treatment for the Vulvodynia. Please give yourself another chance. Come on Ladies speak up!!!!

Name:

Diana

Email:

Date:

4/21/2002

Comment

Katie,I do understand how you feel. The pain is awful but please don't do what you are considering! I have felt like there is no way I can go on but somehow we all do. We just have to take this one day at a time, one hour at a time, one minute at a time. Please know that I am praying for you and I want to know that you are still here with us. There are so many of us here that care about you. God Bless.

Name:

Lona

Email:

lona@tahomagirl.com

Date:

4/21/2002

Comment

KATIE::::: Katie, don't do it. Many of us suffer and some of get relief, some get cured. Have you tried NAET Therapy, or energy work? Counseling? I am struggling here because I too, have held a bottle of pills in my hand and I didn't. Please feel free to contact me off list. Send me your phone number if you like, I'll call you. We will all help you, you don't have to be in this alone. Tho I know sometimes we feel like we are the only ones that hurt. Lona mailto:lona@tahomagirl.com

Name:

Susie Taylor

Email:

susieet@aol.com

Date:

4/21/2002

Comment

Oh, Katie. I feel so deeply for you. I have experienced so much of what you describe and wish that I could talk to you. Please email me at susieet@aol.com if you want another person to talk to. Sounds like you've tried everything, but there must be something else for you. Sending you love, Susie

Name:

Joyce

Email:

Date:

4/21/2002

Comment

Katie, please reconsider. The world is a better place having you in it, someone who can write so elegantly and who feels for other people. Please don't do it.

Name:

kristin

Email:

krissy42042@aol.com

Date:

4/21/2002

Comment

For the poll: I'd just like to say that I have medium skin and dark hair...I don't really think it has to do with skin/hair color, maybe it does...

Name:

LIZ MACK

Email:

Date:

4/21/2002

Comment

KATIE, OH MY GOSH KATIE, PLEASE DON'T TAKE YOUR LIFE! JESUS SAYS HE WILL NEVER GIVE US SOMETHING MORE THAN WE CAN HANDLE. AND YOU SURELY WILL SEE SOME REASON FOR ALL OF THIS SOMEDAY. I HAVE BEEN THROUGH SO MUCH OF WHAT YOU ARE TALKING ABOUT AND I KNOW IT ISN'T EASY. BE STRONG AND KNOW YOU HAVE LOTS OF US OUT THERE WISHING YOU THE BEST AND PRAYING FOR SOME RELIEF FOR YOU!! TAKE CARE LIZ

Name:

Kathy

Email:

Kpnewman54@aol.com

Date:

4/21/2002

Comment

Katie...Please try to hang in there. Remember the saying "Why me"? ..."Why not me"! Try to think of it that way, that the Lord gave this disease to us chosen women because He knew we could handle it. As hard as it is, we've all got to believe that we can do this and that it will not defeat us. I firmly believe that in our time of pain, we are helping those around us in so many ways. The things that they learn and hope they can appreciate their own life and how they should be thankful for what they have. Yeah it's hard, but believe it or not things could be worse! I am speaking from experience.... I too have endured doctor after doctor and treatment after treatment for eleven years, and by the grace of God I pray He gives me the strength to continue to fight and not to let some disease take me away by my own hands. I understand my situation is different from yours in that I have a wonderful husband who loves me more now than he did the day he married me 26 years ago, three beautiful children who love me with all their heart, and a family that truly loves me and shows me so everyday. But my friend, we on the guestbook love you too. Please remember that. We feel your pain and we send you our love. Keep praying. I don't ask for anything specific any more, I just say "Thy will be done".

Name:

Renee

Email:

rtwall15@aol.com

Date:

4/21/2002

Comment

Katie,My thoughts and prayers are with you....I know how hard this disease is as well as does everyone here. Please listen and don't go through with it - it is not the answer to your problems!WE ARE HERE FOR YOU. Please reconsider and know that you WILL get better someday - we all will. God Bless and please seek a counselor as soon as you can!

Name:

Kristy

Email:

somery01@yahoo.com

Date:

4/21/2002

Comment

I was diagnosed with vulvar vestibulitis about a year ago and it has been a nightmare. I am very young (23) and just got married a few weeks ago and cannot even have intercourse with my new husband. He really understands, but I feel like a failure! I finally found a wonderful doctor but now I have to move. Can anyone recommend a doctor in the Houston area? If so, please email somery01@yahoo.com. Also, if any of you have any home treatments, please share.

Name:

Reesa

Email:

Date:

4/21/2002

Comment

Katie - please don't do this. I know how you feel. I'm 24 and have had this for over 5 years. I have been there - but I didn't do it. Please don't. -Reesa

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/21/2002

Comment

KATIE: Please remember that you don't have to face this alone. As you can see from all the supportive posts that flooded this guestbook from the moment you said you wanted to die, you have a community rallying around you. We care about you because we know what you're going through. It's up to you how you want to deal with this ultimately, but you have to know that we shudder at the thought of one of our own being defeated by this awful disease. Don't let it win. We need you to stay alive so that you can carry on the tradition of mutual support and encouragement other women that might even have it worse than you. It is true that God will never give us more than we can handle; it also says He will provide a way of escape. That may not be from the pain, but maybe through the pain. He may have you go through this valley of the shadow of death so that your testimony will be so amazing that people will want to praise Him and bless you. I'm sure we've all felt that utter despair; many times I threatened to end my life if God didn't take the pain away. I hate to think what I put my dear husband through with my despair and pure hate for the world. But remember your sisters in pain are behind you 100%, and I promise to pray for you.

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/21/2002

Comment

Kristy: I think the best home treatment is calcium citrate pills, one with every meal. I didn't have much luck with the low oxalate diet, but then again I was miserable w/o the chocolate/coffee/berries!!! I really recommend topical Estrace cream too; I was able to get a prescription from my primary care doctor. I've only been using for less than a week, but I feel better already, and from what I've read on many vulvodynia message boards, it is close to being a miracle cream. I hope it works for you. I've also heard that it helps to apply tea tree oil (get it at a natural foods store) to the areas that hurt the most. I understand how awful it must be for you to not be able to have sex with your husband. My condition started right after I got married, so these past 5 years have been really rough. You always end up feeling abnormal since most newlywed women get to enjoy sex to their heart's content. I'm just two years older than you, but I'm so happy that you're looking to get help for this condition early in life. I feel so bad for the women who have had to suffer so many years without relief. One more thing, using the Reality female condom REALLY helps ease the burning of sex. It just covers the areas that are sensitive, plus it's good for birth control if you need it. It also prevents the semen from irritating your sensitive areas. Of course, a good lubricant helps ease the friction and the burn. I think Astroglide is the best because it isn't sticky and doesn't dry out as fast as KY. Best of luck to you. Keep in touch!

Name:

Mike

Email:

mike

Date:

4/22/2002

Comment

Name:

Mike

Email:

mike@faithadventure.com

Date:

4/22/2002

Comment

Katie, don't do it! Please talk to someone, a friend, a counselor, pastor, doctor, whoever! Don't let it beat you.

Name:

Mike

Email:

mike@faithadventure.com

Date:

4/22/2002

Comment

After reading Katie's post, and several others following. I have noticed something that I think could be significant. I have noticed that many of those who have these diseases are people who have faith. My wife and I personally know several women who are struggling with it but never would have looked for treatment if we didn't talk with them about it.

I am a Pastor, and my wife and I waited until we were married to try intercourse. It was a huge dissapointment when it didn't work because of the pain.

We found a new doc in the Seattle area and gave her a try. She did something that no doc has done yet. She tested every centimeter of Kim's vagina for pain and irritation. She pinponted all of the pain to two very small areas.

Here theory is that these are areas of inflammation caused by a recurring yeast infection, or one that has lingered for years. She says that so many CHristian women have this because they waited until they were in their twenties to have sex for the first time, and they happened to have a low-grade yeast infection that persisted for years that caused areas of inflammation. Many times it is not irritated by a tampon, it is simply only in an area that can be irritated by a penis.

The treatment that she has suggested has had a really great affect on many women that she has tried it on. She will have us treat a yeast infection for about a month with Clotrimazol, this is important because the normal yeast tests do not show that she has a yeast infection. She does however have a very low grade persistent yeast problem. Not one that can be detected by Kim through pain or irritation or smell or anything. After treating and over treating the yeast, we will start with hormone creams to build up the outer layer of membranes and then move on to injections directly into the inflammed areas.

The doc says that many other doctors stop after a few injections. She says that the key of the injections is to keep going on a regular basis time after time. She says sometimes it take 4 injections, sometimes it take one every week for a year. But eventually the inflammation has to go down. You kill the cause and then rebuild the area.

IT is the most promissiing treatmen that we have looked into yet. We'll let you know how it goes.

The doc is actually a Nurse Pracititioner named Sylvia Berry, working at the Univeristy of Washington women's health clinic.

As we have asked a few close friends to pray for us, and have told them what we are dealing with, we have found that about 1 out of every 3 deal with some sort of pain in intercourse. Most of these people are women who waited until their twenties before they tried intercourse. We have already seen about 7 women begin to see docs to get referrals to see a specialist because we have been open in talking about it jsut with friends.

Anyway, those are just a few things to think about.

I hope that you all find hope.

Mike

Name:

Nancy

Email:

beddie@aol.com

Date:

4/22/2002

Comment

Katie,I am writing from another vulvydynia list where we have learned about your situation and are deeply concerned. you sound like a brave, sensitive, articulate soul . I hear the terrible anguish you are in and I understand how desperately you need relief after so many years of incredible suffering. But please please dont take your own life. Your voice needs to be heard in this world , with you IN this world. Please see a counselor and get the support and help you deserve. I have also thought of suicide, and come close, but thank God was able to find a therapist who cared enough to lead me back to believing in hope again. And I thank God i am still here. Please hang in there. And call a counselor tomorrow. You are obviously a gem of a woman, one the list and world needs...and i PROMISE you there is relief in sight for you. w loving thoughts and concern, Nancy

Name:

Tara

Email:

sobrien1229@yahoo.com

Date:

4/22/2002

Comment

Katie, I just want to tell you to hang in there. I know things will get better for you, you just have to hang in there. My father committed suicide and not a day goes by that I dont think about him and grieve about what my family and I lost that day, and what the world lost; in fact, if I think about it too much I would go crazy. I know if my father had made it though those horrible moments, today he would be so glad that he was alive. I know he didnt mean to hurt us or himself, it was just that he was hurting so bad, that's all he could see.

Katie dont do this to yourself and dont do this to those who love you. Your family and friends love you no matter what it might seem like. Please, please, please, talk to someone. You might even be surprised at how much people really do care. Life can be good. I thought my vulvodynia would destroy my life. It almost did, but I was able to get through it. Good things started happening to me when I was at my worst. I too was in a lot of pain, and wasnt sure I could go on anymore, but things changed and now my life is so much different, so much better..One time when i was especially upset someone told me, never give up, never. Katie, now Im telling you, dont ever, ever give up. Life is too precious, and I believe there is someone, something out there that can help you. Please contact me anytime. I am here for you. I care about you and what happens to you.sobrien1229@aol.com

Name:

Kristy

Email:

sokokl@yahoo.com

Date:

4/22/2002

Comment

Katie,

First off I just want to give you a hug so here it is: (((((hug)))). Also please know that you can e-mail me privately any time. I am availale any time that you need to talk. Also, I have a link that I would like for you to check out that I think might be of help to you. It's the site for the American Pain Foundation. The link to it is: http://www.painfoundation.org. It has a lot of useful information there and also a section where you can share your story with others that are in chronic pain.

I suffer from several other health problems both female and non-female related and I hope to one day share my story at this section of the site that I just mentioned. I also know what it is like to be frustrated with the daily pain and feel like no one is listening to me especially when I had my last dr. Please feel free to talk to me about this or anything else in relation to this.

We all care and want to offer our support and friendship to you.

Here are some more (((((hugs)))) for you. And also a smile: :)

Name:

Jennifer

Email:

Date:

4/22/2002

Comment

Katie, I completely understand your desperation. I too felt imprisoned in my body with vulvodynia. Tell us about how it all started, what you have done to try to treat or cope, what has worked what hasn't worked. I see people are still writing to you telling you what worked for them, but it sounds like you are sick of treatments, sick of doctors, and sick of dissappointments. I thought I would write a list of all of the stuff that is out there to help, without trying to push one thing or another. Maybe one of these will strike a cord with you. I will say that I think if a treatment is working it starts to work within a week...none of this wait three months to see if it takes effect.

Epidural with cortozone and/or pain killers (RSD treatment)Cortozone creamsKenalog shotsantibioticsantifungalslow oxalate dietshort bath every morning and every night and rinsing after urinatingA&D ointmenttricyclicselavilsurgery

I know you probably dread seeing a doctor....If you take the advice some have given you about seeing a therapist, I have a little advice to go with that. See someone that is an expert in Chronic pain, do not go to an expert in sexual dysfunction.

Jennifer

Name:

Jennifer

Email:

Date:

4/22/2002

Comment

The list did not print vertically, as I had typed it. Below I added commas so it is easier to read.

Epidural with cortozone and/or pain killers (RSD treatment), Cortozone creams, Kenalog shots, antibiotics, antifungals, low oxalate diet, short bath every morning and every night and rinsing after urinating, A&D ointment, tricyclics, elavil, surgery.

Name:

Email:

Date:

4/22/2002

Comment

Cut out SODIUM! Buy unsalted (butter, crackers), avoid msg, order steaks plain or au jus on the side when dining out, read all labels, even on all variety of cheeses. Drink lots of water, and do a baking soda douche weekely or bi weekly. I am finding great relief!!!!!!!!!!!!!!!!!!

Name:

Dee

Email:

yteews01@hotmail.com

Date:

4/22/2002

Comment

Katie,I hope you are still here to read along with everyone else who is asking you to reconsider. We all wish that we could say the one right thing that would change your mind. I KNOW what you are going through. I've thought long and hard about doing what you are saying you are going to carry out. Every day I think I made it through one more day. I too lost my friends and almost my job for a while. I did not share my condition with them and they could not understand the change in me. It came on so sudden. Finally I did share what was going on with a couple of friends and they were very understanding. Yes they get tired of being around someone sick, but I told them that I will hide the pain as much as possible when I can to enjoy being with them or getting through the day at work. I cry a lot of tears in the car by myself and in bed or in my room, but then I take a deep breath and keep on going. I wish I had the magic words to make you cahnge your mind or make you feel better other than share what is happening to you with someone in your life so they understand why you are in the condition that you are. Show them some of these entries of how others suffer and feel and how horrible it is so they understand what you are going through. Give someone a chance to care and not push them away like I did. I KNOW how your hurting. As I write to you I'm hurting. I'm sitting on my foot to get the pressure off of you know where. You want to hear something crazy?! I just started seeing a chiropractor for my problem. I don't know if it's going to help or not, I've never gone before but the strange thing is that he found so may things wrong in my pelvic area and in the spots in my spine that relate to this area that I'm going to give it a shot. He believes that once the body is mechanically correct that it then has the great ability to heal other problems in your body, neuro, vascular etc. I just found it strange that the particular spinal cord numbers in my back that coinside with your genital area are out of wack along with my pelvis. This is a shot in the dark, but at least he will help other problems I have and maybe this will be an extra benefit. If nothing at all, it will be a process of elimination. I'm telling this for all of you who need the next step to try. Maybe some have tried and some have not, but isn't it worth a shot before surgery, shots, more creams that havenm't been working. My gyno was all for it. Dr. Glazer felt I should go, but that it alone was not the answer. He wants me to continue the biofeedback, which I will do. Katie, start to make a list of what you have tried. I know you feel you have tried it all. This is your new job. Get organized about it, even if you can only handle a half an hour of research or reading about your condition a day. Keep a log from day to day. Is there any day that you feel even a little better that another day? Or if you have to look at it this way, is there days that make you feel worse? I myself dred work EVERYDAY! Sitting is excruciating. I have a desk job. I wish I had a standing job, but I can't quit because I know I couldn't get as good a job as this and the insurance is great. So I'm stuck. So you see, we all have our own "hell's" of some sort. Our unfortunately makes us feel so alone and unrelateable to other people, But I bet if you sat back and though about it, you could find that everyone you know has some kind of problem and yes we would trade our problem for theirs in a second, but the grass always "appears" to be greener on trhe other side. I also want to believe like others, that we suffer this for a reason, maybe God had you write your entry to pull use even closer together and push the suisidal thoughts further from our minds but please pick one of us to write to. We are willing to take the responsibilty of being the best friend and support system we can. Give it another try. If you are still here, please let us know. Trust me, you will be on my mind all day wondering did she get to see our entries? Did she hold out a little longer? Please God giver her a glimmer of hope. Let her smile even a little smile. We need you here for us now too. I know your tired of fighting the fight. I know your sad and lonely. Just look at all the friends you just made by your entry. Let us know where your from, maybe one of us is close to you. Give us a chance. Let's take a new approach to your life!

Name:

Another Katie

Email:

ktartsy@hotmail.com

Date:

4/22/2002

Comment

Katie, honey, from one young medically necessitated virgin named Katie to another, I feel your pain. I know how frustrating it is and I know you're sick and tired of being sick and tired. But if you decide to end your suffering this way, you will never have the chance to experience all the things you mourn today. True, you won't feel the pain and anger anymore, but in doing so, you deprive yourself of any chance of ever enjoying a career, of making love to a man, of having children, of riding a bike again, of taking a hot bath. I know you can't enjoy them now, but if you hold on, someday you can! Yes, this is a women's disease (read: second priority), but things are happening so fast! Even since I was first diagnosed five years ago, the range of options out there has exploded. Think what might happen in a few more years, as women like us continue to demand our right to reproductive health! Don't wait until you're dead to make a difference! Write the papers today and start your crusade! If a celebrity (?) like Bob Dole can go on national TV and tell the world he can't get it up, a private citizen like you can get out there and say "I live in constant pain, and nobody listens because it's my vagina doing the talking. Well it's bullshit! I'm mad as hell and I'm not gonna take it anymore! Where are the magic pills for me? Where is my condition in the medical textbooks??? You can't ignore me anymore because from now on, I'm going to be heard!" Sure, a posthumus letter to the paper causes people to shake their heads and say "how tragic," but they forget so quickly...stick around and make a vocal pest of yourself and you're much harder to ignore :) Anyway, please, please find something, anything to live for. Find someone to talk to (and for heaven's sake, rig up something so you can get some sleep without supporting your own weight, sleep deprivation is doubtless affecting your state of mind - and your pain level!). Anything that keeps you going another day is a blessing, even if it's a bitter desire to kick this nasty disease before it kicks you. So please, please, please find it for yourself. Love, hugs, and wishing you pain free days ahead, Katie.

Name:

LIZ MACK

Email:

Date:

4/22/2002

Comment

TO KRISTY: I WENT TO A DR RAYMOND KAUFMAN @ BAYLOR COLLEGE OF MED IN HOUSTON. THAT HAS BEEN 12 YEARS AGO AND HE WAS RATHER OLD THEN, SO I DON'T KNOW IF HE IS STILL IN PRACTICE. THE NUMBER IS 713-798-7523 FAX 713-798-5015. HE IS A SPECIALIST IN THIS FIELD AND VERY WELL KNOWN AND WRITTEN UP IN DIFFERENT BOOKS AND ARTICLES. I JUST WISH I HAD NEVER LET HIM DO MY SURGERY (VESTIBULECTOMY) AS IT GOT WORSE AFTER THAT. IT PROBABLY HAD NOTHING TO DO WITH THE DR. BUT JUST THE COURSE OF THIS AWFUL SKIN AND PAIN CONDITION. IF HE IS GONE THAT OFFICE CAN PROBABLY DIRECT YOU TO SOMEONE ELSE. HOPE YOU FIND SOME HELP. GOD BLESS AND GOOD LUCK.

Name:

Diana

Email:

Date:

4/22/2002

Comment

Katie,You haven't posted anything today so I wanted to check and see if you are still here and reading the many postings expressing our concern for you. Please let us know that you are okay. We really do care. God bless you.

Name:

andrea

Email:

Brownandrea4@netscape.net

Date:

4/22/2002

Comment

Hi, I'm 34 years old and have been suffering from 'vulva pain' for 12.5 years! Mainly my pain is localized in the clitoral area. I have yet to hear of another with the pain in the same region? Recently, the pain has moved to the perineal area,as well, extremely nerve-like in nature. The past 12 years have been complete and utter hell, both physically and mentally! I am married and have two amazing children. However, alot of the time I am afflicted with this ailment and cannot perform my 'motherly' duties...not to mention my 'wifely' duties. I've gone to countless very unsympathetic doctors who when cautioned at the examining phase of the possible 'impossibilites' of examining me, would then invariably throw there hands to the air and say they did not know how to help me. Even the Doctors who were so called "SPECIALISTS" in the area did not come to my 'rescue'. I was told once, when I was having difficulty being examined, that maybe I should come back with my husband so that he could "hold my hand"! Insanity I tell you! My pain is so severe and deep within that during childbirth, even with an epidural, I still felt some of the vulva pain! I am so tired of dealing with this illness...it haunts me daily! I just want a Doctor who is willing to take the time and look into my case. There has been no 'real' tests pertaining to this pain done on me. I am presently on the drug Neurontin. Not really sure if it has helped at all? I happened upon this website in a moment of 'lucidity'...usually, I try to stumble around in denial. I think I really need to talk with someone about this, someone who also shares my pain as well as someone who knows of Doctors who truly care...and will go that extra mile to ensure that person has a better quality of life. I live in Canada and am unaware of any support groups or considerate, thorough Doctors? If anyone has any insight, info. or just wants to talk...please do not hesitate. I'm not going anywhere and either is this disease so it seems!?

Name:

D.

Email:

Date:

4/22/2002

Comment

I just have to say that women with vulvodynia must be the most caring and compassionate women alive! Most likely because we understand what real suffering is all about! I want to thank all of you women for displaying such sincere compassion to Katie! You give all of us strength to keep fighting!

Katie, I am 23 and when I first came down with this illness, it was so terrible that I told myself that I would kill myself in a year if I wasn't cured. I just couldn't imagine living with that iron inside of me that you describe so well. Well, that was two years ago. I never believed that I would improve, because for over a year, not one damn thing that I tried worked! Now, finally, I am SLOWLY responding to a combo of things that are giving me my life back. There is so much hope out there.

But it sounds as if lack of sleep and lack of food and nutrients might really add to your pain. Please please reach out to someone, any of us, for help. I am positive there are treatments out there you have not tried.

I am thinking of you constantly and I send you all my love!!!!!

Name:

Patti

Email:

pattin@dmcom.net

Date:

4/22/2002

Comment

Katie - please please please stay with us, we need you. I am 28 and have been dealing for about 10 years. Not a virgin but I can't really ever remember if I've had good sex and not too often pain free. I am unmarried, no kids and no prospects at the time, and I have the big head trip of who will deal with this? but I take it day by day, on a new dermatologist and a new cream and the next step will be Neurontin. I have pain in my clitoral area, like it is being poked with something sharp. Have felt similar pain there but always found a 'hair' or something, not this time. The vulvar area is basically always 'irritated' and or itchy. Not horrible pain but discomfort. After many doctors and many treatments, I just recently got the diagnosis 'vulvodynia' which was actually a step in the right direction, I knew about it but never was diagnosed. Then I went back a week ago and was told well, thats pain and you're 'irritated, so that might not be what it is. Does there have to be a certain damn level of discomfort? I also have an inside like burning feeling that extends down the inside front of one of my thighs. Last several relationships, sex a major issue because of pain. I found myself hating it and doing things I didn't want to do or was too tired to do, etc. to try to keep up a kind of normalcy, well FORGET that. No more. I have learned a lot throughout this. I am sick of it all but keep on going because I have hope. I ask and pray for healing, direction, guidance, an answer frequently, get angry at God, blame him, blame myself, etc. but I know that after all is said and done, I have to keep going. I am getting better at the blaming myself part. I want to take control of it and quit smoking, eat better, try diets, go away to get other treatments but right now I am sticking with this one doc and his treatment because It is all so overwhelming that it freezes me and I have to figure at least I am doing something. What is further, is they don't have specialists in my area and no pelvic floor PT which I heard works for some. I find it very frustrating that I have tried treatments and later hear someone else had to take them for longer for it to work and how then can I rule anything out? It feels impossible and I have no idea what to do next etc. BUT I KEEP PRAYING AND GOING TO COUNSELLING AND AVOIDING DRINKING (6 years now) AND I GET THROUGH ONE DAY AT A TIME. I know my friends sometimes get sick of it because who wants to talk about vulva's? They even joke about it to get me to laugh but sometimes I want to scream when they do that, whough I know it's all just an attempt to be supportive. I WANT TO HAVE KIDS! We'll I am now just going on blind faith. I believe that my attitude and my positivity and my hope and prayer and working on these things will lead me to a path where I WILL find solutions and I WILL have kids and I will find one of the few guys who will deal with this and love me anyway. I am not going to the docs with a 'maybe this will work' I hope I hope I hope. I can't handle the disappointment that brings so I jsut say ok, we're trying this and If it works, good, if not, onto the next and so on. GOTTA keep it in today and do the best I can. I really hope you heard my cry for help tonite, because like I said I NEED you. Thanks, everone for listening to my long post. Very open to feedback.

Name:

Nini

Email:

macsilver7@earthlink.net

Date:

4/22/2002

Comment

KATIE: I too know what it is like to feel that there are no more options. I realy think your sleep and nutritional deprivation are making it worse. When we are in so much psychic pain, we must attend to the most basic needs first: EAT something nutritious: some pasta with veggies for energy. If you cannot sit or lie down, can you get a hammock or something where you could recline in a variety of positions? Find someone, anyone to help you do this. If you have to, check into a hospital and let them put you out so you can sleep.After you have attended to the basics, get some help.,There is SO much support here and on the lists for us VV sufferers. There are support groups. Please email me anytime. If you feel comfortable, tell me where you are and maybe I can come help you. I live in the Boston Mass area.

HUGS!!Nini

Name:

Lexi

Email:

Date:

4/22/2002

Comment

Hello. I am knew to this sight and would like to share my experience. I have been suffering from vulvodynia for a little over a year now. It got much worse when I was pregnant (I just delivered my third baby in January). I was actually suicidal when I was pregnant and had to go see a psychiatrist along with antidepressants to get through my pregnancy. My pain is constant along with some itching. I have seen three doctors for this and finally have found a women gyno who doesn't think I am "nuts" like to men gynos I was seeing. Right now I am a using premerin estrogen cream. Just started it and seeing if it will help. I was maybe going to look into seeing a dermatologist for this condition since apparantly I have been tested for every STD, vaginal infection, etc. but everything shows negative. But my gut feeling about this disease is that maybe its a type of infection that doctors or scientists haven't discovered just yet. Because it just seems obsured that there is no cure. I was absolutely fine for 28 years of my life and then last year all of a sudden I just got this horrible thing. It sucks because I have three beautiful kids and just want my life back. Anyway I pray to God that it goes away soon for all of you suffering from this. GOD BLESS.

Name:

Nini

Email:

Date:

4/23/2002

Comment

I used to post here all the time, but stopped bec many of the regulars disappeared. I also settled upon a course of action that seemed to have started me on an upward trend. I have been doing the biofeedback, internal massage and taking effexor XR. Bec I have chemical sensitivity it took a long time to get up to a dose that helped. My husband and I began to have intercousrse VERY CAREFULLY!! My clitoris is where I have most of my pain, so he still can't come into cotact with it during PIV sex. I recently had a setback where I developed blisters on my clitoris and received REALLY POOR medical care for it. That is another story. It turned out to be a yeast allergy.

Frank B: I feel much older and wiser now than when I began to post here. I know that way back when I said something that offended you bec you no longer respond to my posts. On days when I was feeling low, this hurt, bec previously you were one of the folks who always responded. I want to apologize for whatever I said to offend you. I certainly didn't mean to upset you. Reading Katie's post reminded me of how much support I got from this site. Thank you.Nini

Name:

Melissa

Email:

barefoot423@yahoo.com

Date:

4/23/2002

Comment

Katie:

Like many of the women who have posted messages above, I learned of your message from women on another list. I can't pretend to know the pain you are feeling now. I can tell you that I have been where you are - not because of vulvodynia, which is relatively new for me - but because of sexual assault. Living each day required so much strength - too much strength - and I just felt as if I'd never feel happy again, that I had suffered enough and that I just could not go on in a world where no one really understood me and wanted to hear what I had to say. Instead of seeming frightening, death seemed quiet, peaceful, gentle. I could see myself totally separately from my body - I could actually make myself leave the shell (as you describe it, too) and look down upon myself, this body I did not recognize and did not want to live in anymore because it seemed too painful and too dangerous.

There are two things I did which make me able to write to you today, one of which you are already doing. A wonderful woman I knew, when I told her of my pain, said to me "Keep writing. It will save your life." And so I did. I kept pouring all of it out of me, the pain and frustration, the overwhelming anger and sadness. And I see you are doing that. You did it so beautifully and eloquently that you reached all of us with your voice. We are hearing you. We want to listen. Your words have meaning and resonance, but they can only do that so long as you keep writing them. You have the gift of self-expression, a gift which not even this terrible disease could take from you. You are brave and strong enough to have this gift, a part of you that is free of disease, that is healthy and perfect. Nourishing this part of me is part of what kept me alive; I pray that it will keep you alive too.

The other thing I did was that I started treating myself the way the mother I needed at that time would have treated me. I became that person towards myself, loving and tender and gentle but also fiercely protective. Some people call that God; I don't happen to think that myself. What I do think is that I gave myself, my bruised, fragile self over to the care of this nurturing woman inside of me and slowly - with some definite help from therapy, too - I nursed myself back to health.

The world we live in is filled with so much cruelty. I can imagine how acutely you feel that, to be living with such a terrible disease. I felt that what had happened to me had become me, that I did not exist outside of the assault and that it had re-defined every part of me. But the world is also filled with beauty; I felt that again after reading your post. How remarkable that in the depths of your pain and suffering you created a message that touched all of us so deeply.

I think of the women on my list, a bunch of women I'll probably never meet or talk to, as invisible angels. I may not be able to see or touch them, but I know they are there and they make me feel less lonely. Please let us do that for you. Please let us hold you up and comfort you and let our faith in you help you to heal.

Please feel free to email me anytime: barefoot423@yahoo.com. I am here. I am listening.

Love,Melissa

Name:

Lisa

Email:

lily@rivernet.com.au

Date:

4/23/2002

Comment

Hello, I asked my doctor to trial me on neurontin and because its quite expensive, he prescibed epilim. When I looked it up in MIMs (which is like the medical prescribing guide in Australia) neuropathic pain is not one of the indications -it is with neurontin. Now I'm a little wary about taking it. has anyone else been prescribed this drug and with any success. thanks.

Name:

Frank B.

Email:

Date:

4/23/2002

Comment

To Nini: I cannot remember being offended by anything you wrote. Although I try to read the site often I am aware that as one of the only men to post here I can easily over do it. The very personal nature of vulvodynia and its symptoms must make many of you ill at ease knowing a guy is reading. I'm sorry if I make it difficult for any of you I'm just interested in any progress being made. I also am a compassionate person, I have been through and live with alot of physical and emotional pain, so if someone crys out for help or advise I tend to give my two cents worth. I was very upset to read of Katie and I did what I could by posting and leaving a message with the Dr's voicemail. You are all in my thoughts in a kind and hopeful way. I don't get any sexual kick reading of your private pain just in case anyone was wondering. I have posted far too often and do not want to be an annoyance so I will cut back unless specifically questioned. My best to you all and Nini feel better, thankyou...

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/23/2002

Comment

Although I can only speak for myself, I rather appreciate Frank B.'s presence on this site. Frank, you always have something encouraging and insightful to say, and I sense that you may be here in a way as a surrogate for your wife (true?) as well as a genuinely concerned soul. As far as I'm concerned, you're more than welcome to post as much as you feel led to share. Your perspective as a man may be something that we can all benefit from, since maybe we don't feel comfortable talking to the other men in our lives about our conditions. Since the founder of this site is a man, I think we can all appreciate that sensitivity and compassion are not just feminine characteristics!

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/23/2002

Comment

Has anyone heard of the possible link between Accutane and vulvodynia? I was reading on an acne website that it may be a suspicious combination. I was on Accutane three times from age 16 to 20. It worked each time, but then after a year my acne came back worse and worse. But maybe that's what caused my vulvodynia/vestibulitis to start about 1-2 years later. Please respond if you've had a similar experience.

Name:

Email:

Date:

4/23/2002

Comment

Katie, before you do something so drastic think about this....my guess is you don't WANT to die, you just want to leave life/your suffering body right now. The thing is, if you go, you can't come back. I would bet that there have been several times over the years that you have felt this desperate, but then if you wait, the desperation lessons, kind of like waves. Please write to us, please let us know you are o.k.

Name:

M.

Email:

Date:

4/23/2002

Comment

KATIE -

Are you still with us??? Please post something so we know you made it through the past 2 days. Please tell us where you live. Someone might have some kind of encouraging news for you, you never know.

I don't know about everyone else, but I can speak to the damage of sleep deprivation. All I need is two or three nights when I'm short on sleep - usually because of being completely stressed out about my un-fabulous life with vestibulitis - and then I absolutely can't cope with the smallest stresses during the day. I'll cry at the drop of a hat, feel completely hopeless, etc.

I've learned when to stop, think, and remind myself when I feel like I'm at the end of my rope - "oh yeah, I'm on my third day of being seriously short on sleep!" - then I just try to chill out, have no caffene, and go to bed early, so I can get it back together and keep on going.

Katie, I know that sleep is not the big answer to all your problems - but on top of all your other problems - being waaaay too tired to deal will make you feel like you're loosing your mind!!

Tell us where you are (city and state), if you're up to it, list the things that you have tried, I mean name the drugs, creams, etc.

If any of us can help or suggest something or someone to you, you can count of the fact that we will.

Pleae post an answer asap!! It probably doesn't feel like much good, but everyone here is behind you!

Come on Girl!!

Name:

leigh Whaling

Email:

whalingleigh@hotmail.com

Date:

4/23/2002

Comment

I have learned that I have vulvadynia. I have suffered for 20 yrs. with it and have just now gotten a dignosis. I am tring to learn as much as I can about it and how to treat it. For so long I was told it was just all in your head. Finally I have gotten some answers that I so desperately needed. Thank you for any and all the information you have provided.

Name:

Kathy

Email:

Kpnewman@aol.com

Date:

4/23/2002

Comment

Frank...Don't leave us now, we need you friend! You were the first one to respond to Katie and encouraged the rest of us to follow suit. I value your insight on this disease from the point of view of the husband and that you are not embarrased to discuss this "woman thing" openly and honestly. After all, it's just another part of the body that needs medical treatment and maybe somehow working together, we will all get through this. Hang in there with us and thanks for your help!

Name:

Jackie

Email:

Date:

4/23/2002

Comment

Looking for a specialist for vulvodynia in Toronto. Can anyone offer any info?

Name:

Frank B.

Email:

Date:

4/23/2002

Comment

Thanks for the kind words of support. I will continue to monitor the site but as I said I need to back off a bit. Yes if my wife was involved here I probably would not be posting. I do honestly care and hope some of what I say gives a little comfort. I'm still wondering about Katie, I don't doubt her words. When doubled over with an intestinal blockage or kidney stone I have had some very desperate thoughts. Who knows the extent of her specific ordeal. I believe it is possible other women have taken extreme steps because of vulvodynia. The stigma of this illness would tend to keep it out of the media as such. Katie you are in our thoughts where ever you are. However things unfold for Katie we owe her thanks for letting us see how bad it can get for some. Talk about vulvodynia to whom ever will listen and if you have an unsympathetic employer or doctor make a point of saying VULVODYNIA. Conditions need a name and talk time to be considered valid to those who don't suffer. So much for me not posting, sorry!!!!!

Name:

Nini

Email:

macsilver7@earthlink.net

Date:

4/23/2002

Comment

KATIE: PLEASE let us know you are still with us!! Your post has incited a wave of concern and support. It is al out here for you. Please at least let us know how you are.

Frank: I didn't mean to chase you away!! I Just wanted to apologize for offending you and clear that up. There is no need to leave!! On my account or otherwise.Nini

Name:

Leigh

Email:

whalingleigh@hotmail.com

Date:

4/24/2002

Comment

Katie, I am praying for you! I know that God can take your pain away. I have prayed that prayer for myself for 20 years. I first started seeing signs of pain when I was just 18 years old. Iam now 35. So you see I have been dealing with this a very long time. For many years I did not know what was wrong with me. And I thought that I was the only one in the whole wide world who had these weird symptoms. I have been to many drs. tring to describe what I am feeling and was told that it was yeast. I knew that it was not yeast. Then I had to hear that it is all in my head. Anxiety seems to make it worse. But it is defentely not all in my head. Please don't give up. God is a big God. He can heal you.

Name:

Rita

Email:

Date:

4/24/2002

Comment

Hi all! I am now going to a vulvodynia study here in New Brunswick, New Jersey if anyone wants to participate please let me know I will post the # to call. I got tested for food allergies and will let you know if that's what it is.good luck to you all!

Name:

Diana

Email:

Date:

4/24/2002

Comment

Jackie,You might try contacting the Wasser Pain Clinic in Toronto. I know one of the Drs was doing research on vvd. You can learn more about them at:http://www.mtsinai.on.ca/wasser/Patients/default.htm

Name:

Diana

Email:

disneygram@hotmail.com

Date:

4/24/2002

Comment

Katie,Please let us know what is happening with you!! There are so many of us worried about you and wondering if there is any way we can help you. If you tell us where you live there might be someone locally on the list able to contact you with some help. Please know that you are in our thoughts and prayers.

Name:

Jean

Email:

Date:

4/24/2002

Comment

Hello, I know I have seen reference to the use of an amytriptylene cream compound being used instead of the oral medication. Do any of you have experience with using this treatment? Have any of you used Topamax, an anti convulsant medication that is somewhat like Neuronton?Thanks.

Jean

Name:

Email:

Date:

4/24/2002

Comment

Name:

laurel

Email:

Date:

4/24/2002

Comment

For Jean: I was not able to tolerate the neurontin orally. My doctor (Dr Stewart, MA) had it compounded for me in cream form. I must admit it was a few months back and I still have yet to try it. I am on so many other meds for a number of problems, so I am holding out for now. But, she did say that I would avoid the side effects that the pill gives. Good luck. And Frank, please stick around. We value your information. Best, laurel

Name:

Frank B.

Email:

Date:

4/24/2002

Comment

To Nini & Laurel: I did not feel chased away or insulted I just think I was posting too much. I'm still reading and if a post really is directed towards me or a guy's point of view I'll respond. Not much new on my homefront and there seem to be many new women signing on. I'll sit back and let the better informed advise them. My ego is not bruised I really think some of you are staying more current with treatments so I won't take up space unnecessarily. Thanks and feel well.

Name:

Nini

Email:

Date:

4/24/2002

Comment

I am here at my friend's house and I asked if I could check the guestbook to see if Katie said anything. My friend said maybe Katie hasn't said anything bec she IS OUT getting help and not bec she went thru with it.Nini

Name:

Leanne

Email:

lfhstarr@aol.com

Date:

4/24/2002

Comment

Katie- I will say a rosary for you tonight. I know how you feel. My pain was so intense for the first years that I used to lie in bed at night and rock back & forth saying god, why me? why me? Please dont give up........We all love you and are in the same boat...recovered with flare ups or going thru it for one day or twenty years...no one deserves this pain...no one....

To everyone else. I think its great; including the men whom participate here. I really think that sharing ideas and taking them to our doctors is wonderful. I was one of the lucky ones whom recovered thru elavil & interferon treatments, with a very rare flare up, but I have made a promise to myself & god to do whatever I can for others still suffering. You never forget...Never what this is like...Anyway, I think maybe we should start a way to bring this to the attention of the Government or Public Media...Please do not laugh at me....They need to start really bringing this disease to the table...more funding...more research....Sometimes media pressure can get the fire burning. I know when I was sick I never cared about this matter, but its very important that we take a stand....We live a silent hell and know one seems to know what it is or why? Many causes...Many Symptoms...Many Treatments...Its like if I had my leg cut off tommorow...I know my pain in the severed area would eventually go away...but with this disease....the pain never goes away,,,,unless it wants too ...or unless maybe its time for it too....I have often considered writing a book, but I need the ending....We need to find the ending...Im sorry for being so emotional tonight, but when I read Katies story...We all know what this is like and thats where the chronic pain can lead us....We need to take action and get something done...We seem to be the doctors here and the answers....God Bless Us all Familys included....

Name:

M.

Email:

medusa_m5@hotmail.com

Date:

4/25/2002

Comment

TO RITA:

I also have an appointment in New Brunswick, NJ, this coming Monday. I would love it if you would e-mail me personally to see if we are going to see the same people. If we are, it would be nice to be in touch . . .

M.-

Name:

Pamr

Email:

pasnorkel@aol.com

Date:

4/25/2002

Comment

Hi, I'm new to this board. I was diagnosed 2 days ago with Interstitial Cystitis after a year of untreatable urinarty tract issues - infection never showed. many of my symptoms are the same as all of yours, and I have found this to be the case with most IC'ers. I have urinary frequency, urgency, burning (sometimes my whole crotch just burns), sore feeling in my entire vulvar area, spasming feeling in bladder/urethra/clitoris, hyper-stimulated clitoris, etc. I am currently on Elmiron. I am going to ask my doctor about Atarax & Elavil. My homeopathic cures are : glucosamine, MSM, aloe, Acidopholus, calcium citrate and marhmallow root. I figure 3 months of all this crap & I will either be the healthiest woman on the planet, or dead. I have gone on a no yeast, no sugar, no alcohol, spice, citrus, soy diet. So, my question is this - forgive me if this has been discussed, but I don't have time to read 17 books worth. Is there a connection between IC & Vulvodynia? have any of you been diagnosed with IC? have any of you even pursued it? is it in fact, the same condition?

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/25/2002

Comment

Pamr:I don't know if there is a direct correlation b/t IC and vulvodynia, but from what I've heard on this site, when one of bodily systems gets out of whack, the others around it seem to follow suit. For years I suffered with IC-like symptoms only to find out that the outer skin of the urethra was just irritated by vulvar vestibulitis. I was amazed that it could produce such similar symptoms to a UTI or IC condition, but I was never diagnosed with either. I think that our vulvar skin is so sensitive (and sometimes crazy!) that it can mimic symptoms of conditions we don't even have. For instance, we itch but we have no yeast infection, we have urinary urgency but we have no bladder problem, etc. It's the most frustrating thing to have these problems, but thank God we have each other to talk through it all. Hope this helps.

Name:

Pamr

Email:

pasnorkel@aol.com

Date:

4/25/2002

Comment

dana, thanks for the info - I had wondered about some kind of urethral irritation myself, because all the discomfort (spasming, etc.) seems located in that area and last summer it was just driving me absolutely nuts!!! So beside diet, how is Vulvodynai best treated - Elavil? I was a perfectly normal, healthy person one day & then the frickin bottom dropped out!!

Name:

Pamr

Email:

pasnorkel@aol.com

Date:

4/25/2002

Comment

dana, thanks for the info - I had wondered about some kind of urethral irritation myself, because all the discomfort (spasming, etc.) seems located in that area and last summer it was just driving me absolutely nuts!!! So beside diet, how is Vulvodynai best treated - Elavil? I was a perfectly normal, healthy person one day & then the frickin bottom dropped out!!

Name:

Karin

Email:

aixsponsa@hotmail.com

Date:

4/25/2002

Comment

Hi, i have had vulvar vestibulitis and vulvodynia for about 2 years now. nothing has worked. i have recently started on 100% pure aloe vera, instead of the estrogen cream. i seem to have some relief. has anyone else had any similar experiences? please email me. thanks, karin

Name:

Lexi

Email:

Date:

4/25/2002

Comment

To Rita: You wrote that you are presently in a study in New Brunswick. Couldyou please post an address or phone number for me. Thanks!!!!!!!!!!!!!!

Name:

M.

Email:

Date:

4/25/2002

Comment

Pamr:

There is no one way that vulvodynia is treated. Different things have helped different people. And some have gotten no help at all. While anyone is welcome here, you might benefit more from an IC site (I know there are quite a few) and the IC Association always has the latest information on their site. But for VV treatments - you should really take some time and look through the books, or go to the FAQ section on this site.

Incidently - I too have urethral symptoms and on my last visit to the doctor she explained that the Skenes(sp?) Glands are situated right up against the urethra - on either side. They are very inflamed along with the vestibulitis, thus, there is a sensation of urethral irritation.

Hope this helped.

M.

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/25/2002

Comment

I find that the low-oxalate diet food lists I find on the internet are extremely confusing. Why do they all seem to contradict each other? One list says I can eat certain foods, while another list says I can't. I tried the diet a few months ago, but I gave up when I saw no improvement in my condition and got fed up with the crazy lists. I also hated having to eliminate all the foods that I loved: veggies, OJ, berries, chocolate.

Name:

pamr

Email:

pasnorkel@aol.com

Date:

4/25/2002

Comment

M- i have spent time on the IC boards since last summer. like i said, there are so many similarities. I have read many times that the "experts" (whoever they are!) feel there is a connection between IC, Vulvodynia, IBS, Migraines & Fibromyalgia. I have also heard from several people with IC who feel as if they have a mild case of Vulvodynia as well. All I know is that many times I fel like my entire crotch area is on fire, or like right now that I have been kicked in it - very sore. Sitting hurts. Wearing pants hurts. I noticed the post from Miso ( I think she said she had IC?) who spoke about the long term antibiotic therapy. many ICers believe their disease is caused by very tiny bacteria that do not show up in a standard urine culture. A "broth" culture is done, which reveals these bacteria & long term (6-12 months) low dosage antibiotics are given. They seem to work, but you also have a lot of yeast to deal with & clear up. No doubt about it, irregardless of what we all have none of us desrve to suffer like this. Is there any advocacy group?

Name:

kristin

Email:

Date:

4/25/2002

Comment

i have been here before but i just have to say thank you dr. glazer and everyone who writes on this site, it is so supportive to know that there are other women who feel this way and we can go through this together. Before i found this site and others about vulvodynia, i had no idea what the hell was wrong with me, but now i know, and its not because some doctor told me so, i actually brought it up with her and she referred me to someone who knws more. Anyways, i have been coming to this site for a month about and i still feel pretty bad most days, actually there is pain every day , but when i read of those who r cured and those who are getting better, it makes me feel much better about this whole thing and gives me hope that someday soon i will feel much better too and be me again all the way...

Name:

Melissa

Email:

barefoot423@yahoo.com

Date:

4/26/2002

Comment

Katie: Please let us know if you are still with us. Every day I check here hoping you will have spoken, waiting to read your words. Please, please let us know you are safe!

Love,Melissa

Name:

Tina

Email:

mag1@canufly.net

Date:

4/27/2002

Comment

I have just been diagnosed with vestibulitis. The pain only occurs during sex or sometimes inserting a tampon. I am 23 years old and have been married for 4 years. These syptoms have only plagued me though for the last 9 months. Before then, I had no problems. I had no pain during sex. Then it seemed like all of a sudden it started hurting really bad. I would cry and it hurt to urinate afterwards. I would hurt for about 30 minutes after. I have been taking birth control for 5 years and have been on an anti-depressant for about 6 months. My previous OB/GYN prescribed a steroid cream. But that didn't work. I went to another doctor this week for my yearly PAP. It hurt so bad that I wanted to scream! It feels like someone is sticking me with hot knives. I am going back in three weeks to discuss treatment options. My insurance will not cover biofeedback. Has anyone tried any other treatments that have been successful? Any help would be greatly appreciated.

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/27/2002

Comment

Tina: I'm sorry to hear that you are hurting so much. We all understand what you're going through and hope that you get the help you need. I personally recommend Estrace estrogen cream. It seems to help many more people than steroid creams. Try looking on the internet for other vestibulitis/vulvodynia treatments. This site has some very good information. Everyone is different in how they hurt, how they deal with the pain and how they get treatment, but everyone can benefit from sharing their story on this message board. You have definitely come to the right place to begin your treatment. Best wishes to you!

Name:

susanne

Email:

Date:

4/28/2002

Comment

I am from Denmark and I have been suffering for vvs for about five years. At first I only felt pain during intercourse but now I also feel pain when the area has been irritated by other forms of "friction". When i was ten I was diagnosed with juvenile arthritis - has anyone heard anything about a possibel connection between arthritis and vvs. Thank you for advices and support!Susanne

Name:

DebbieJM

Email:

debjean@bright.net

Date:

4/28/2002

Comment

Hi all. I am 46 and have been reading this site for the past couple of years. After about 7 years of guessing games with my gyn I switched 2000 summer and finally get the diagnosis of vulvodynia. At that time the gyn prescribed zoloft. It seemed to have help but I really didn't want to be on meds and stopped taking them in July of 2001.

I've tried everything (i think). I also had many recurrent yeast infections in my 20's and 30's and at the beginning of this, figured it was yeast. I've been cultured many times and yeast wasn't found. I tried the yeast diet, diflican, clobestriol cream (which I was scared of and hated), nystatin, calcium citrate and others.

Currently I am taking a GNC women's vitamin, magnesium/calcium combination, Protega vitamin (I had a heart attack in Feb of 2001 - go figure - no damage - due to stress), aspirin for the heart, b complex 100 and just started NAG. I have had some real bad days - lots of stinging, burning pain.

Is there something in my current vitamins that anyone thinks could not be good? The B's??? I also take progesterone cream for endometrosis and I can't do without it. My periods would be a mess.

Please respond and thanks.

Also, alittle descriptive but...... I can have sex. It does hurt sometimes or alot of the time - mostly stinging but wow does it make for some good orgasms. That may sound kind of bizarre but I would do anything to get rid of this pain, stinging I feel.

Name:

DebbieJM

Email:

debjean@bright.net

Date:

4/28/2002

Comment

I forgot - see above posting. I also am using estriol cream which my pharmacist compounds - it is like the estrate cream. I really don't see or feel much benefit from it. It stings when I put it on and when I go to bed, of course that's what I feel - stinging?????

Name:

Dana

Email:

sdferri@attbi.com

Date:

4/28/2002

Comment

Velkommen, Susanne! I am glad to see a fellow Dane on this site. I have also been suffering from vv for about five years. My symptoms also started with intercourse and seemed to have progressed similar to yours. It's no fun, huh?! I'm not sure about a connection between vv and arthritis although you may want to do more research about that on the internet. Perhaps the breakdown of the cartiligate between the joints is a similar degeneration to the breakdown of the skin in the vulvar area, but that's just a guess. I really hope that you can find some answers. Paa gensyn!

Name:

Jen

Email:

browneyedjen79@aol.com

Date:

4/28/2002

Comment

I am a 23 year old single female who has suffered with vulvodynia since I was 15. I have had 2 long term relationships and believe that both ended partially due to my vulvodynia. Both guys thought it wouldn't be that hard to deal with and then later realized that it is as much emotionally stressful as it is physically. So first of all I would like to applaud Mike and Frank, hopefully there are more understanding, patient men like you out their. Your wives are very lucky.My family couldn't be any less supporting. The only sort of support I have now is from my best friend. It was so hard to be in a relationship with this horrible disease, but I am now finding out that it is just as hard, if not harder, being single and out in the dating world. What guy wants to put up with a crying woman after intercourse and can't even move? What man wants to stop in the middle because the woman is in to much pain? This is so rediculous. I am now on anti-depressents and neurontnin. I'm ready just to give up. These doctors seem to know nothing. I went to U of M for years and I'm worse than ever. I feel like the harder I try the worse I get, so what's the point?Anyway, if anyone knows of a decent doc in MI I would be greatfull to hear of any suggestions. Also, is their any sort of support group out their? Good luck to everyone!Jen

Name:

D.

Email:

Date:

4/28/2002

Comment

I would like to comment on the connection between arthritis and vulvodynia. I have tried continually to draw attention to the work that Dr. Ledger is doing in NY at the Weil Cornell Medical Center. As I have said in the past, he has discovered that over 50% of women w/ vv. have a gene that makes them prone to inflammatory diseases. He can give you a supplament that will correct your body's response to inflammation. I am not a doctor, but I believe that arthritis is an inflammatory problem. There might be a connection worth checking out. I remember, either on this guestbook or the previous one, that a woman said that her vulvodynia went away after treating her arthritis.

I know Dr. Stewart was trying to get her hands on this new drug that has been a miracle drug for arthritis patients. She told me this last year. It has not yet gone on the market, but she has been hoping that it might work to quell the inflammation in vv patients. So far, she says that she has not been able to obtain it. I think that she does not believe that any current arthritis meds could help us.

I am not a doctor, but it looks as if a lot more research needs to be done, and I recommend that those interested should ask their doctors what they think about a possible connection.

I hope this helps! I also want to ask readers to review the many therapies that we have talked about, especially when people have gotten good results. There is a wealth of information in these guestbooks! It is essentially the reason why I have almost recovered.

Name:

karin

Email:

aixsponsa@hotmail.com

Date:

4/29/2002

Comment

has anyone had any surgerys, either the vestibulectomy or the perineoplasty, that could tell me about it? i am wondering if you lose all feeling in that area afterwards...thanks.

Name:

Lynna Dunn

Email:

ldunn@che.lsu.edu

Date:

4/29/2002

Comment

I can't tell you how relieved I was to find this site. I am thirty-one years old, single, and haven't had any children.

About two years ago, I started having rectal pain and spasms. I went everywhere and talked to everyone, but nothing helped. I was told it was "in my head." So I went to therapy, and am emotionally heathier than I have every been. However, not only do I still have trouble with "butt-pain," I have VVS as well.

During the time I was worrying about butt pain, I had to go to the OBGYN several times for itching or stinging. The doctor could never find a clear cause. Still, they treated me for yeast and vaginitis. Each time the symtoms would subside . . . for a while. At the end of last fall, I was diagnosed with stage-three dysplasia, and had an area of my cervix frozen. After that, I have not been able to have intercourse. The opening to my vagina feels like a ring of fire.

My partner is very supportive, and we have found plenty of other ways to be intimate. I can have orgasms, just not with penetration.

Still, I get very scared when I think about bearing this forever. Rectal pain and vaginal pain are quite a lot to bear, particularly at the same time. Right now, the Gastro guy is treating the butt pain as an IBS variant and getting ready to try me on anti-spasmodics. The Gyno has me on Aldara (my dysplasia was related to HPV). I can't help but wonder if these two conditions aren't related somehow.I'm a vegetarian and everything I do is healthy--except smoking, an old stress habit which I can't seem to ever totally drop because of pain or fear of it. I hate the idea of more pills or surgery, because the doctors seem to be shooting in the dark. Still, how does one work? Have sex? Have a family?

I would like to try Chinese medicine or accupunture first.

If anyone out there has had a similar set of symtoms, and found relief, please email me. If you're in the Baton Rouge, LA area, just email me. Maybe we can give each other support. I've gotten so tired of being viewed as crazy.

Name:

Dee

Email:

Date:

4/29/2002

Comment

What is perineoplasty? I was told that I am not a candidate for surgery because I don't have that shooting pain when given the q-tip test, but my skin is always sore in a particular area. That u-shape spot always mentioned. I get very sore there from sitting and of course after intercourse. It is hard for me to tell if I hurt inside or not. I think after intercourse the wall towards the bottom of my vagina may also be irritated. After sitting when I have to urinate it burns for about 15 to 20 minutes but when I first get up in the morning I feel fine and can urinate without the burn. Has anyone had this area of skin removed but did not have the point pain? I swear if it was taken away I would feel so much better. Any comments or suggestions? I know surgery is the last resort. I think the only thing left before this is to find out id I may have vericose veins or interferon shots. I don't know what else is left!

Name:

laurel

Email:

Date:

4/29/2002

Comment

To Lynna: It was relieving to know that I am not the only one with both vaginal symptoms and rectal pain. When I went to see Dr Davis last november he did a full rectal exam, and saw that I have a full fledged case of proctitis. yes, they are relted he says. Your pain will only remain if proctits is what you have and it is not treated. I think there may not always be a cure, but it certainly is treatable (stress, foods are irritants). if indeed this is what you have, you may look into hydrocortisone suppositories or Proctofoam. I hope this info helps you. I am usually pain free or low pain, provided the rectum is not swollen. Also, it makes the abdomen swell, and it swells the bladder making it agonizing!! Drink lots of water and cut down on the sodium. The fact that you are a vegetarian can make symptoms worse. Please stay low oxalate. Good luck, laurel

Name:

Leanne

Email:

lfhstarr@aol.com

Date:

4/29/2002

Comment

To Dee: Before you have the surgery, you may want to consider having the Interferon Injections. It worked for me. Surgery per my specialist should be the last resort. It has worked for many, and sugery should be your last choice, of course we are all different. I am fully recovered but know try to dedicate time to women that are still suffering. Good Luck and If you want more info email me directly. Im not a doctor, and many treatments work for many people in different ways.

Name:

Mary

Email:

Date:

4/29/2002

Comment

Here is what has helped me. I am post menopausal and have never used HRT. The Dr. told me my membranes were thin and that was causing the burning. I started using natural estrogen cream, progrestrone cream, and Balck Cohost andDong Quai. When I had yeast infection the burning was worse. Everyday I take a Acidophilus, Garlic, and Capryic Capsules. I am now free of pain and burning!! I also take cranberry capsules to prevent bladder infections. Good luck. It works for me!!!

Name:

dolores

Email:

dodiedee@msn.com

Date:

4/30/2002

Comment

Mary:

Could you tell me what natural estrogen cream you used. Did you put the progesterone cream in the vagina/

Name:

Lynna

Email:

ldunn@che.lsu.edu

Date:

4/30/2002

Comment

To anyone who has used Aldara successfully:

How long before you begin to notice a difference for the better? I am on my third application, and it seems to be a little worse. However, I just started my period, and it's always a little worse then. Please let me know.

Also, to Laurel:

Thanks for responding. I don't have proctitis (almost wished I did, because things might be simpler). Thankfully, I do drink a lot of water and go easy on the salt. I've been a vegetarian a long time, long before this inexplicable hell began, so although I think the low-oxalate diet is a good theory, I wonder why all the women in the world who are vegetarians aren't suffering from this dysfunction if oxalates are so horrible. Anyway, thanks for your response ;-) However it is, I do believe the conditions are related and it's nice to have back-up on that.

Lynna

Name:

Donna

Email:

Date:

4/30/2002

Comment

Does anybody have a good idea on a natural lubricant? I have one now with calendula, and aloe, but it still has the parabens in it. Is vegetable oil really okay? I was doing better taking the gynatren suppositories, which is replacing the good bacteria into the vagina, but intercourse still makes me sore . The soreness is in the 6 o'clock position. I have been diagnosed with lichen planus, and maybe the skin is just fragile there. I really don't look forward to intercourse because of the soreness, but it seems like the skin tightens when weeks go by without it. I have spoken to a naturapathic doctor who says lichen planus is thought to be caused by yeast or fungus, but I have also read autoimmune. it is very frustrating, but I keep trying anything. I also take Black Cohosh, Dong Quai, and evening primrose oil for the skin. The doctor says that these conditions often come on at the time of menopause.I also wonder about the episiotomies that I had a year apart when my kids were born. It seems that the soreness has settled right about where the scars would be. Who knows. I have been suffereing with this since the age of 38, I am 41 now, and I can't get it out of my mind that hormones must play a role for me. I also did a lot of bike riding in my day, but I can't do it right now. I have started a walking program now, bit I miss my biking. I wonder if that played a role in this. It gets frustrating when you can't do the things you like to do, including being intimate. Hopefully these natural things will eventually start working, I try to only resort to steroid cream as a last resort. I keep thinking that steroid cream only masks the problem, I have to get to the root of what is causing this disorder lichen planus. I may try an immune adjuster next that controls an over reacting immune system. i have always had allergies, asthma, and had to have allergy shots twice in my life, so maybe my immune system is attacking my healthy skin. I hate when this consumes my life, I try to keep going as always, but sometimes my mind wanders when my kids are telling me something, and I hate that. I just want my health back, never a million dollars. Thanks for letting me vent. I know just how you feel, but I will never give up, and I will find the answer someday.Most of the success I have had with symptomless days has been from searching out my own cures. my doctor is not very helpful.

Name:

M.

Email:

Date:

4/30/2002

Comment

Donna:

Try Astroglide for lubrication. My doctor recommended it to me, in fact, several of my doctors recommended it to me and it works really well.

Name:

Joann Newberry

Email:

jnewbe1028@aol.com

Date:

4/30/2002

Comment

Dear Dr Glazer, My daughter is suffering from this disease and having no luck in finding a Doctor that can help her. She is in Italy and her doctor is a military Doctor. He is kind of experimenting on her and I am afraid he is going to do more damage than help. He has told her that Surgery is the only answer. She is very distrubed and does not know what to do. Her email address is Sharon.Winnicki@aviano.af.mil if you could help in any way I would be eternally grateful. She is coming home to the states the end of May so if there is a Doctor that you could suggest in the Charleston SC area that would be a big help too.SIncerelyJoann Newberry

Name:

miri

Email:

keetvulee

Date:

4/30/2002

Comment

Suzanne from Denmark, Hi! this is my first time at the site and i was also looking to see if there was a connection with Juvenile Rheumatoid arthiritis. I have it as well and currently have an elevated sed rate. but i believe that this vulvodynia or vestibulitis developed from using monistat for treating a yeast infection. I tried elavil but then went to a new doctor and he has me on atarax and estrace. so far it hasn't improved, i think it may even have gotten worse. they also found that i have HPV. does anyone else here have that and think it may be a link? it's so embarassing writing about all my illnesses, it makes me feel so very less than...:(

Name:

Email:

Date:

4/30/2002

Comment

trying all of these creams and drugs...rinse rinse rinse with water. This does not help everyone, but what a benign thing to try if you haven't yet...take a cool to warm bath in the morning and one at night, and rinse with water after you urinate. It will help in less than a week if it is going to help, you don't have to wait forever, it's worth a try. Believe me I do not think this is a cure, but it can make you much more comfortable.

Name:

Brittney

Email:

brittmeymac@hotmail.com

Date:

5/1/2002

Comment

I was diagnosed with vulvodynia a year ago and I was treated for it with a laser surgery. My question is, does anyone know if it comes back? Cause I was fine for awhile, but now I think it's back. I don't think my OB/GYN knows too much about it. He always tells me it's sore and tender because I'm pregnant. But I think there's more to it. So if anyone knows that it could come back, please let me know. Thank you so much! Have a great day!

Name:

susanne

Email:

Date:

5/1/2002

Comment

Hi D., Dana and MiraThanks for your comments on the connection between arthritis and vvs. I have contacted my doctor at the arthrithis-clinic and asked him too consider the connection. I have also been in contact with Dr. Ledger who has reccomended me to do the gene-test - but he is the only one who does it, so I suppose I have to go to New york. Mira, maybe you should contact him as well. I have read some of his articles and they are quite interesting. The refereneces are: "defective regulation of proinflammtory immume response in women with vulvar vestibulitis syndrome" and "Interleukin 1 receptor antagonist gene polymorphism in women with vulvar vestibulitis" both are to bee found in American journal of obstetrics and gynecology. Only 30 % of the women Dr. Ledger has tested have the gene-polymorphism - but anyway it might be worth trying. it is important that it is vvs you have and not vulvodynia.Susanne

Name:

M.

Email:

medusa_m5@hotmail.com

Date:

5/1/2002

Comment

To Joann Newberry:

Tell you daughter NO SURGERY!! Especially if she is seeing a doctor who is not experienced with this condition. When she comes home get her in contact with the National Vulvodynia Association, or take her up to Ob-Gyn at Duke, so she can get in touch with some doctors who have some experience with this condition.

I have been warned by several doctors that specialize in VV syndrome in the Phila., New Jersey area to NEVER let anyone perform surgery for this condition, with a special warning to stay far away from lazers.

I hope this helps. Tell your daughter to feel free to e-mail me, and to hang tight until she gets home. This disorder is getting more attention here than it is in Europe.

M.

Name:

Donna

Email:

Date:

5/1/2002

Comment

For Mary:How long did it take for you to notice improvement taking the Cohosh, and Dong Qui? I have been taking it for a month, but I was curious to see how long it took you to see benefits. Evening primrose oil is also good for vaginal health. I listen to a holistic show on the radio called Duke and the Doctor, and she raves about those herbs that you are taking, and evening primrose oil. I figure it can't hurt to try these things.

Name:

Dee

Email:

Date:

5/1/2002

Comment

Hey Everyone, In the May 27th issue of Women's First Magazine there's a little paragraph on page 106 that says there was a study at the UCLA Medical Center that found "nitroglycerin" is effective in treating Vulvodynia. It said that within 5 minutes of applying the ointment, all the participants in the three month study felt relief and 50% had "significant reduction" of pain during intercourse. Has anyone heard of this or have they tried it? I never knew nitroglycerin had a cream form. It did not say how many people were in the study. It did say ALL participants felt relief. I just wanted to let everyone know that I had seen this last night in my magazine. God Bless!

Name:

Kathy

Email:

Kpnewman@aol.com

Date:

5/1/2002

Comment

To Medusa_m5@hotmail. I agree with you about the laser and the other surgery. I had 3 lasers in 94-95, a small improvement for a short while, then it came back. Never say never, but I do not plan to ever have that done again. It was horrible. Not just the fact that the first one done on me, I was given 8 injections for numbing and then the doctor hit me with the laser tooooo quick and the numbing had not quite taken effect (I thought I was going to die from that pain alone), but taking care of the tissue and trying to get it to heal without getting infections, etc. It ain't worth it! Then I had 3 surgeries in the hospital in 1996 (the bottom of the vulva first, the left side next, and then the right side). Again helping it to heal, of course it was easier to help stitches than it was charcoal-burned tissue from the laser, sitz bath after sitz bath, several post op doctor visits, not to mention the doctor and hospital bills. It was the same thing again, the burning never really went away, maybe subsided, but 6 months after all that, here it came again. I don't plan to do that again either! One more thing, do you know anything about any of the ob/gyns at Duke? I live close by there, I just didn't go because I found a doctor in a smaller city that is closer to me. Of course now I don't have a doctor because he took a medical leave. Oh well, sorry to complain, it's been one of those pain filled days and I took a Percocet about an hour ago. Thanks for listen to me whine!

Name:

Dee

Email:

Date:

5/2/2002

Comment

To Kathy regarding the 3 laser surgeries from 94-95. Are you the same Kathy that had vericose veins? I noticed that the email address was the same except for a "54" in the address. The reason I am asking is because you mention that your pain is back and my impression from the enty on 4/19 regarding treatment to vericose veins was that your pain went away. Are you one in the same? I apologize if you are not. Thanks, Dee.

Name:

miri

Email:

keetvulee@hotmail.com

Date:

5/2/2002

Comment

Has anyone tried soaking in baking soda? I'm trying it now. just thought it might work since it's so basic in Ph.i was on the estrace cream but got more irritated from it so now i'm trying this. also i read about oatmeal baths. has anyone had relief from that?

Name:

M.

Email:

Date:

5/2/2002

Comment

Check out this new study on interferon and vulvar vestibulitis, it's very interesting, and not just more of the same old info.M.http://medwire.md/news_final.asp?story_id=7758&news_type=21

Name:

Kathy

Email:

Kpnewman54@aol.com

Date:

5/2/2002

Comment

Dee, Yes I am the Kathy "54". I am sorry about that, I wasn't thinking when I typed in my email address. About my varicose veins and the pain thing, I am sorry I misled any one, the pain from my varicose veins (throbbing, stinging, swelling of the veins), that was the pain that was taken care of. The feeling of acid being poured on me type of pain is what I feel now and have always felt since day one. In other words, since this disease started in 1991, I have burned and no matter what I have done or had done since then has not lasted very long or has not worked at all. The varicose vein surgery and injections fixed the "vein" problem and my legs feel and look great and the vulvar veins do not hurt. Does that make sense? I personally and probably like a lot of us, am having a "bad time" right now. As I said before, I don't have my doctor that diagnosed me with vulvodynia in 94 because he took a medical leave. I know he needed to and I understand that, but he was like a security blanket in a way, and someone I could depend on to do what he thought was best for me at the time. I also mentioned that I live near Duke Medical Center, well, my doctor consulted doctors there and at the hospital in Chapel Hill and did what they would have done had I been going there. It just seems like I'm in limbo. I am going to my regular GP and she fortunately knows quite much about vulvodynia, but I still miss my other doctor. I know it sounds like I am having a pity party for myself and I am and I apologize. I think about poor Katie and I am so much more fortunate than she, but y'all know how it is when you are in pain, you just want a little sympathy. I will be okay. I really do thank God for all of you on this guestbook, it helps me from being so alone in this thing. Thanks for listening all of you, and tomorrow will be better. Kathy

Name:

M.

Email:

Date:

5/2/2002

Comment

Sorry all - I just discovered the link I posted doesn't work. The article is this: Interferon implicated in Vulvar Vestibulitis, from March 22, 2002 in the American journal of Obstertrics and Gynecology. You can find it on their website, or on medwire.In short Weill Medical College in NY sais that and inabitity to produce interferon-a may contribute to chronic vestibular inflammation.It also said that the women deficient in interferon did not have an increased prevalence of HPV and there was no relation bewteen interleukin-1 receptor antagonist genotype and interferon-a production.Check it out!!!!!!!!!!!!!!!!!!P.S. about Duke - I don't know anyone there, but I heard they have a good vulvar dermatologist. I suggested it because I have found that hospitals that are more on the cutting edge have information about this disease. So it's more likely that if you deal with them, rather than the little guys, you might get better treatment (that has been my experience). Duke is major! It's got to be a good place to start.

Name:

Email:

Date:

5/2/2002

Comment

To Susanne: Your symptom is one of the mysteries of Vulvodynia. Many Gyns will prescribe Estrace which is ointment with estrogen. If you suffer from low estrogen this will help, however from reading the many posts in these guestbooks you will realize for the majority of vulvodynia sufferers this is not the case. You might consider the Estrace or some other medication that will be suggested, a word of caution don't use more than one thing at a time unless you are confident with the Dr. prescribing. Best of luck and stay strong.

Name:

TO MIRI:

Email:

Date:

5/2/2002

Comment

Hi Miri: I've had relief from both baking soda baths and oatmeal baths.

Name:

Leanne

Email:

lfhstarr@aol.com

Date:

5/3/2002

Comment

To M- & All others....I just want to say that I read the website that M provided to us....I am speechless tonight...7 years ago I was treated with the alpha interferon injections which was completely successful. Ive had one minor flare up and took elavil for 30 days which was successful..I will say after reading the information this is a major break through for women whom could not be producing the endogenous interferon-a properly which would have been the reason i was sick to begin with. I for one will be going to my doctor for a test to see if this is the case. For years I never had any idea why this worked and now there has been a major break through and I encourage each and every woman out there to seek more information...Read the article and follow up with your doctors....For some this could greatly help...(.M....I am so very grateful for this and maybe this will greatly help some others out there suffering if they find out there bodies are not producing the endogenous interferon a properly in there bodies...God Bless...Lets go Researchers....

Name:

Leanne

Email:

lfhstarr@aol.com

Date:

5/3/2002

Comment

To M- & All others....I just want to say that I read the website that M provided to us....I am speechless tonight...7 years ago I was treated with the alpha interferon injections which was completely successful. Ive had one minor flare up and took elavil for 30 days which was successful..I will say after reading the information this is a major break through for women whom could not be producing the endogenous interferon-a properly which would have been the reason i was sick to begin with. I for one will be going to my doctor for a test to see if this is the case. For years I never had any idea why this worked and now there has been a major break through and I encourage each and every woman out there to seek more information...Read the article and follow up with your doctors....For some this could greatly help...(.M....I am so very grateful for this and maybe this will greatly help some others out there suffering if they find out there bodies are not producing the endogenous interferon a properly in there bodies...God Bless...Lets go Researchers....

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/3/2002

Comment

Susanne....venlig hilsen. In response to your last post, to help the skin calm and heal, I recommend topical Estrace cream. It takes a while to work and causes itching in the beginning, but it is proven to increase bloodflow to the skin and speed up the healing process. Also, very interesting what you shared from the article about arthritis and vv. Let us know what else you find out from your doctor too. Farvel.

Name:

Email:

Date:

5/3/2002

Comment

Just take a bath, you don't need oatmeal or any other stuff...just a bath every morning and every night, and rinse when you urinate. I know a lot of you are thikin..."this lady does not realize what vulvodynia is" but your wrong, it helps a lot of people.

Name:

Jennifer

Email:

Date:

5/3/2002

Comment

I have not written in a while. I was off line for a long time. Anyway, I thought I would chime in about the baths that have been mentioned....this is what I believe, and I have written this before, a long time ago. I believe women have vulvodynia for many different reasons, BUT I think a lot of women have their immune system kicked up, for whatever reason...infection, autoimmune, etc, and interleukins get fired up to fight the thing and those fighter sells get mixed in with our discharge (like pus in a cut) and drip out and that is why the irritation on the vulva near the entrance of the vagina is so severe. For whatever reason your vulvas are reacting more severly than other parts of your GYN and urinary tract (although some have both IC and VVS) AND that it why your anus might hurt too, because if you were taught right you wipe front to back.Sooo, the water will help rinse of the agravating culprits being overprodiced by your body. Like I said this is not a cure, not a solution for everyone, but not ridiculous either.

Name:

Miri

Email:

keetvulee@hotmail.com

Date:

5/3/2002

Comment

Dana, thanks for your comments about Estrace. It was recently prescribed to me but after two weeks i noticed it was more of an irritant so i stopped using it. you're saying that the irritation goes away? I also read that it's better to use compounded Estrace (something i didn't get) where it's made by a special pharmacy that prepares medicines as naturally as possible. how long did it take for the estrace cream to stop irritating and to start helping?

Name:

Miri

Email:

keetvulee@hotmail.com

Date:

5/3/2002

Comment

Dana, thanks for your comments about Estrace. It was recently prescribed to me but after two weeks i noticed it was more of an irritant so i stopped using it. you're saying that the irritation goes away? I also read that it's better to use compounded Estrace (something i didn't get) where it's made by a special pharmacy that prepares medicines as naturally as possible. how long did it take for the estrace cream to stop irritating and to start helping?

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/3/2002

Comment

Miri, in my experience, Estrace was only mildly itchy for the first two weeks. Otherwise, it was great! I think you might want to try a compounding pharmacy though; perhaps your skin is more sensitive. I really hope you have success with Estrace since it has worked for so many women.

Name:

M.

Email:

Date:

5/3/2002

Comment

Concerning soaking:Soaking with baking soda has the potential to assist yeast to grow, so if yeast is your problem, skip the baking soda. Using aveeno oatmeal soaks can acutally be much more helpful than plain water. Plain water will rinse off discharge, etc., but colloidal (sp?) oatmeal bonds moisture to the tissue and has good anti-inflamatory and anti-itch properties as well. (Ever soaked in it for Chicken Pox??) Spending too much time soaking in plain water will actually help to dry out your skin - so yes actually, oatmeal soaks can be better than plain water. Try different things and see what is best for YOU.One more thing (sorry, I have said this before, but it keeps popping up). Estrace cream may or may not help you, but in any case it has NOTHING to do with your estrogen levels!!! If you are given Estrace, talk to your doctor about how it works so you understand the hormone thing.Estrace has worked very well for some people that I have spoken with, and these people had all the proper blood work done to determine that their hormone levels were normal. Always remember that when reading here, it's easy to feel that nothing works for anyone. Not many women post here who have recovered. (Thank God for the ones that do!) But women who have recovered DO exist - and the very treatments that many of us have had little success with, have fixed other women up just fine! You have to keep trying until you find the thing that will work for you.Best to all . . .

Name:

Miri

Email:

keetvulee@hotmail.com

Date:

5/3/2002

Comment

Dana, Thanks for your comments about the Estrace. I stopped using it recently cause it was causing irritation. So you're saying the irritation from the Estrace eventually goes away?

Name:

Miri

Email:

keetvulee@hotmail.com

Date:

5/3/2002

Comment

Dana, Thanks for your comments about the Estrace. I stopped using it recently cause it was causing irritation. So you're saying the irritation from the Estrace eventually goes away?

Name:

Miri

Email:

keetvulee@hotmail.com

Date:

5/3/2002

Comment

Dana, Thanks for your comments about the Estrace. I stopped using it recently cause it was causing irritation. So you're saying the irritation from the Estrace eventually goes away?

Name:

Miri

Email:

keetvulee@hotmail.com

Date:

5/3/2002

Comment

Oops, please excuse the repeated notes. I'm new to this.

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/3/2002

Comment

Miri. Not for everyone, but for me and many women, the irritation from Estrace does go away as the skin toughens and heals.

Name:

Callie in Florida

Email:

Date:

5/4/2002

Comment

It's been a VERY long time since I've contributed to guestbook, but felt it was a good time to do so again.I've had VV for almost 4 years. At first, it was so awful that I couldn't sit for any time at all. I quit my GOOD JOB because I just couldn't sit!I started Elavil 3 1/2 years ago and that has helped a lot. But I've always been a slender woman and I've gained a lot of weight from Elavil and hate that.So here's my question. Has anyone had good luck (VV isn't gone, just much, much better) w/Elavil and then taken yourself off the Elavil? My reason for asking is I really want to go off it and maybe try a different tricyclic that isn't as proned to cause weight gain.So again, anyone that's had luck w/tricyclic and then gone off it, and do you go back to feeling really bad again or what?

Name:

H. Abrams

Email:

Aspenabrams@aol.com

Date:

5/4/2002

Comment

Thank you so much for this website. I have been recently diagnosed and waiting to find a doctor. The information on here is amazing Thank you

Name:

Pamr

Email:

cqyarbro@hotmail.com

Date:

5/5/2002

Comment

Callie - You need to come off any anti-depresant slowly. I am on one now (for depression, not IC or Vulvodynia). Coming off one suddenly can cause withdrawl symptoms for some people (not all). I know paxil does this to a lot of people. And I don't know of any tricyclic that does not cause weight gain. I was on pamilor years ago & am now on remeron. I am going to ask my doc about elavil, as i have IC & suspect I have Vulvodynia as well.

Name:

Pamr

Email:

cqyarbro@hotmail.com

Date:

5/5/2002

Comment

I have a question about sex & discomfort. I know intercourse is a problem for a lot of us. Does anyone experience discomfort after oral sex?

Name:

Jennifer

Email:

Date:

5/5/2002

Comment

M. is right, keep trying. Now, I agree that you should not be soaking for long periods of time. I preferred plain water to the oatmeal thing, because the oatmeal is messy. The bath should be for 5 minutes or less in cool to warm water...not a long soak. Also, M. is right that when you read hear it seems hopeless a lot of the time, but I have been out of pain for over a year now after suffering for 8, and every so often people come back and post to tell their successes. I will never forget how horrible it was to be in that pain everyday, I will never forget how horrible it was to deal with the doctors, and I will never forget my desire to help myself and all women who suffer with vulvodynia.Oh, I wanted to make a comment about the estrace. It is true that women use it, even if their hormones are fine through blood tests. I am no doctor, but I assume it is possible to have blood serum level be normal, but it not be high enough in those tissues? SImilar to progesterone in the uterine lining? Just thinking aloud here. I will say that I tried Estrace twice and my breasts felt like I was pregnant, it was very uncomfortable, my doc insisted it was impossibly from topical estrace, but it happened both times I tried it, and a women I work with tried it and had the same problem. My point is that my opinion is that Estrogen is obsorbed through the mucous memebrane of the vulva so if you are a menstruating female with no cyclicle problems, you might be introducing extra Estrogen. Again only my opinion...having said that I think it is worth a try and if it helps, who cares about all of the possibilities of side effects vulvodynia is horrible.

Name:

Leanne

Email:

Date:

5/6/2002

Comment

Jennifer-Would you mind sharing after 8 years...What you were able to do to have success...I know many women have many different success reasons.....

Name:

Jennifer

Email:

Date:

5/6/2002

Comment

Leanne, I was successful using IV (intra venous) antibiotics. Look back in Guestbook 16, I am all over that guestbook with my information. Basically I had narrowed down feeling better and the tissue healing while taken certain antibiotics, so I go a megadose of IV antibiotics and it worked (on the second try). I believe a lot of vulvodynia is infectious and transmitted...this is my belief, not the medical establishment.

Name:

Email:

Date:

5/6/2002

Comment

Pamr-In regards to oral sex. Yes sometimes it does bother me. My pain is mostly a skin soreness not a burning and if I engage is oral sex for "too long" and my husband is in that area I can be extra iritated the next day but I refuse to give it up all together. Sometimes I just feel extra hot "down there" but the aftermath from oral sex is 100 times better than the next day after intercourse. I think the swelling is what causes this for us.

Name:

Jennifer

Email:

Date:

5/6/2002

Comment

Guestbook 16 4/3/02...that tells my history, and then I have a lot of post after that.

Name:

Dee

Email:

Date:

5/6/2002

Comment

Callie - I took Amytriptylene (Elavil) 100mg for a year. Unfortunately it did nothing. I stopped cold turkey twice. I guess I needed to convince myself that it wasn't doing anything for me. Anyway, for about 2 to 3 weeks afterwards I felt like I had an upset stomach after I would eat and I would feel tired and weak at these moments also. This happened both times but the symptoms were stronger the first time around. I don't suggest cold turkey. You are supposed to "wean" off of them. The best thing would be to check with your doctor for how he/she would want you to stop taking them or switch to something else.

Name:

Dee

Email:

Date:

5/6/2002

Comment

In one of the old guestbooks (if anyone recalls which one and when I'd really appreciate if you could let me know) there was a mention about using "magnets". Has anyone tried this? I just went to the health food store at lunch and bought a small set for $20.00. The person that mentioned them in the old guestbook said you can get them from Amway and I believe they are very costly, over $100.00. Would anyone know if there would be a difference between the inexpensive pair I bought as opposed to a more costly set? Is a magnet set a magnet set regardless? Any input on this would be greatly appreciated. Also, if I were using these on my neck or wrist you are supposed to affix them right to your skin. Does anyone know if I were to tape them to a pair of underwear on the outside and then wear a second pair of underwear overthem, would they still work the way they are supposed too? Thanks for any help!

Name:

Jennifer

Email:

Date:

5/6/2002

Comment

Please please please wean off of drugs like xanax, elavil, tricyclics, narcotics, etc. Very bad to go cold turkey.Jennifer

Name:

Diana

Email:

Date:

5/6/2002

Comment

Dee,You might look at guestbook 17 on 6/6/2001. Someone mentions using magnets. You might also check out:http://www.thewebpaige.com/vpf/200107/msg00233.htmlSomeone actually describes how she uses the magnets and how they have helped.Good luck and let us know if they work for you.

Name:

Frank B.

Email:

Date:

5/6/2002

Comment

Well so much for keeping quiet! I just saw a Dr. Erica Schwartz on my local news. She wrote a book " The HormoneSolution" talks about bringing the body into hormonal balance with natural supplements safely. Might be of help to some of you ladies. Even though a endocrinologist said my wife's estrogen levels both blood and vagina cell scraping were normal I still think that for her it is a problem with hormones. The Estrace did not prevent the tearing but it did appear to impact her labia which were shrinking. I'm going to check out the book, my wife would not do hormone replacement for fear of cancer and I would not push her to do that. I will encourage her stay current and learn more as it is known. This probably will not be of use to those suffering with symptoms caused by factors yet unknown. Best of luck to you all and stay strong.

Name:

Reesa

Email:

reesadz@yahoo.com

Date:

5/6/2002

Comment

2 People mentioned black cohash and evening primrose oil (and was there another supplement?)What dose and how often do you take these?

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/7/2002

Comment

Since you ladies have "seen it all", I wonder if any of you has ever tried Aci-Jel, a prescription medicine that restores the vaginal pH back to the norm. From what I've read, it can reduce the instances of yeast and bacterial infections, which I seem to get quite often, and which we all know can make our vulvodynia so much worse. Supposedly it's mild and non-irritating to the tissues. I'm thinking of asking my doctor for an Rx for it but wanted to check with you all first.

Name:

Leanne

Email:

Date:

5/7/2002

Comment

Comment- For those women whom have vaginal tears in the labia or outside the vulva area I have read threw out these guestbooks...I am no doctor, but when I was going to my vulvadynia specialist in 1996 I had a women whom was there with me suffering from this very thing. First they tested her for Chrons disease which to be quite honest i dont know what the results were....But, I do know she had her urine sent to a doctor in the midwest whoms specializes in oxalate levels in the urine...She had to take calcium citrate with D. and stay on the low oxalate diet...she had been sick 4 years...tried everything and after doing this she healed within a year but it took 6 straight months before having any improvement. This had never worked for me....But then again i didnt have tears either....dont know if this helps any of you, but i remember someone it did make a difference for...she was also around 54 years old and had to be given estrogen also....She had taken a perscription called bactrim for a urinary infection which set the whole deal off.....Hope this helps.....God Bless.

Name:

Donna

Email:

Date:

5/7/2002

Comment

For the question about the Black Cohosh, and the evening primrose oil, here is what I take. I take Women's Formula by Vitalogic. You can order it through The Institute for Healthy Living. There site is on the internet. I take 2 capsules a day, it also has Dong Qui in it. The evening primrose oil is also by Vitalogic and I take 4 a day, but one or two I believe would be fine for hormonal problems.I take more because it is good for skin, and I have lichen planus. The evening primrose is supposed to help the vaginal moisture, and the skin. I feel better on it. You have to remember that natural supplements will not work as fast as conventional medicines. I feel my lichen planus is an internal problem, so why should I just put steroid creams on it, and mask the symptoms. I am also looking into the immune end of it. I recently called the radio show Duke and the Doctor. I highly reccomend their web site. She said that lichen planus is thought by some doctors to be caised by yeast or fungus. I have mostly read autoimmune, but some say the cause is unclear. She recommended Gynatren, which I have used for 1 month now. It is a suppository that you insert every night, and in the morning you take an acidophilus pill for your intestines. The vaginal suppository is also an acidophilus strain that is normally found in a healthy vagina. I have had good results from it, I believe that a lot of our problems are do to bad PH, or not enough of the good bacteria in our vaginas. years of creams, steroids, antibiotics take there toll. Someone should call her on the show about vulvodynia and see what she says.

Name:

kblemly

Email:

kblemly@attbi.com

Date:

5/7/2002

Comment

For Mike in Seattle, An excellent resource in Seattle in Sylvia Berry a nurse practitioner who specializes in this area, she is at the Univ. of Wash. Women's clinic on Roosevelt and it takes a couple of months to get a first appt, with her but it's worth it. She's very experienced and knowledgeable.

Name:

Dee

Email:

yteews01@hotmail.com

Date:

5/7/2002

Comment

M - I've been trying to get to the article you spoke about about interferon shots. I can't seem to get there. Could you please tell me how or could you forward it to my email address above. I desparately want and "need" to read it. Thanks so much for your help!

Name:

Email:

Date:

5/7/2002

Comment

Anyone know of a low oxalate multi vitamin brand, or prenatal vitamins? thanks.

Name:

Miri

Email:

keetvulee@hotmail.com

Date:

5/7/2002

Comment

I am currently being treated by my new doctor with a combination of estrace and atarax, i guess the theory being that vestibulitis is a chronic allergic rxn that releases histamines, causing inflammation and the other symptoms. Has anyone had success with this treatment? What are your opinions? Thanks.

Name:

Jennifer

Email:

Date:

5/7/2002

Comment

Leanne, interesting story about the other woman that had taken bactrim for a UTI and was being tested for Chrons. This is how that all fits in my theory...I believe that the women had become infected with some sort of bacteral infection and she tried to treat it with bactrum, and maybe this helped her intense bladder pain, but the infection was not completely treated and progressed throught out the reproductive tract. I believe the antibiotic did not cause the vulva pain, but rather she was already starting to have urinary/reproductive problems...I think she would have had the vulvodynia with or without the bactrim (lots of people will disagree with that)...Anyway the other interesting thing is that she was being tested for Crohns. When women with Chrons show vulva symptoms, the vulva usually heals considerably while taking Flagyl.

Name:

Judy

Email:

MitziMitz@aol.com

Date:

5/7/2002

Comment

I have had this problem for many years and no one diagnosed until last November when a Dr. in Boynton Beach Florida did. But, all she did was to tell me to take Nortriptyline 10mg and take baths with a tropical fish salt. it hasn't helped and I am in the middle of a terrible attack. Sometimes it eases up for a while, but there is always some discomfort. I am now in NJ and cannot find a Dr. to help me. My own ob/gyn has told me he can't help me to see a dermatologist, which I did and he gave me a hydrocortsine cream, but he said vulvodynia was just a name for pain in the vulvar. My General Dr. never heard of it. I went to an urologist and he said I was not canditate for an operation and goodbye. My husband's urologist said he knows about it but it is very difficult to treat. I don't know waht to do now.

Name:

Judy

Email:

MitziMitz@aol.com

Date:

5/7/2002

Comment

I have had this problem for many years and no one diagnosed until last November when a Dr. in Boynton Beach Florida did. But, all she did was to tell me to take Nortriptyline 10mg and take baths with a tropical fish salt. it hasn't helped and I am in the middle of a terrible attack. Sometimes it eases up for a while, but there is always some discomfort. I am now in NJ and cannot find a Dr. to help me. My own ob/gyn has told me he can't help me to see a dermatologist, which I did and he gave me a hydrocortsine cream, but he said vulvodynia was just a name for pain in the vulvar. My General Dr. never heard of it. I went to an urologist and he said I was not canditate for an operation and goodbye. My husband's urologist said he knows about it but it is very difficult to treat. I don't know waht to do now.

Name:

Becky

Email:

bkdris@coin.heartland.net

Date:

5/7/2002

Comment

I wanted to know do any of you ladies have a burning tongue? I've been having alot that problem too with this disease.I would like any advice I can get. I hate this burning tongue plus the burning and pain I have.Sometimes it worse then other times. I wish we all could get rid of this disease we have. I'm still taking the Elavil and doing the low oxalate diet. Bye for now take care everyone.

Name:

Donna

Email:

Date:

5/8/2002

Comment

To the person asking about the histamine theory, I believe that you could be on to something. believe a lot of mine started with the use of Always pads. I sed them for many years, and from researching them I ave found articles to say they are very allergenic. My gyno even admitted to that. I have read that the adhesive when exposed to body heat releases formaldyhyde which can't be good for your skin. I believe it causes an immune type reponse that is hard to remedy. I makes me mad that the manufacturers have put that stuff in the pads. I ave switched to natracare natural pads, and am considering the ones you wash. Natural tampons are available also. I have also come across a product called Moducare that is supposed to regulate the immune system, where if it is too active it brings it down, and if underactive it speeds it up. It's made up of sterols and sterolins plant material that is found in nuts,and plants. it was at the health food store and was telling the lady about the lichen planus and she suggsted it and said that it was one of the products that they had such success with People with allergies , arthritis, lupus, or ant disorder involved with the immune system. if I try it I'll let you know how it works.

Name:

M.

Email:

Date:

5/8/2002

Comment

Judy - Your one doctor was right, Vulvodynia literally means "vulvar pain", which could be anything. It's an annoying word to deal with when the doctor doesn't know what it means. But the problem is very real!! What part of New Jersey are you in?? Can you get to Philadelphia, New Brusnwick, or New York City???

Name:

NACERA NEKKA

Email:

LAMER105@HOTMAIL.COM

Date:

5/8/2002

Comment

my concern is about vulvadynia pain, i would like to get some advise , i,m victim of vulvadynia,i have been suffer from this desease about 3 years, i tried everything but nothing seem works, my pain get worse, the pain affect all my life,i don,t now what to do, sometimes i want to suiced,if any way i can get help,i will appreciated,not hope for me,i need help,please. think-you

Name:

NACERA NEKKA

Email:

LAMER105@HOTMAIL.COM

Date:

5/8/2002

Comment

my concern is about vulvadynia pain, i would like to get some advise , i,m victim of vulvadynia,i have been suffer from this desease about 3 years, i tried everything but nothing seem works, my pain get worse, the pain affect all my life,i don,t now what to do, sometimes i want to suiced,if any way i can get help,i will appreciated,not hope for me,i need help,please. think-you

Name:

Miri

Email:

keetvulee@hotmail

Date:

5/8/2002

Comment

Good luck Donna with that Moducare, and yes, let us know how you fair with that.I want to tell you all about something else. last night i spoke with the woman who sells Emu Oil. It actually comes from ostritches, and although i haven't taken it yet i have heard it works great for vulvodynia. She sends out free samples too! Her name is clover and her number is (406) 363-1710.

Name:

JUDY

Email:

Mitzimitz@aol.com

Date:

5/8/2002

Comment

Since I posted this , I got some good information. I am near Robert wood Johnson Medical Center. i am trying to get in touch with the vulvodynia Research center they have therre, but I haven't been able to find anyone. I can get to NYC. Unfortunately I can't go right now because my husband is recovering from a very serioous operation andd I have to take care of him. Hopefully he will recover in another three or four weeks and I can take care of my problem. Meanwhile I am coping the best I can.

Name:

Karen

Email:

Karbethw@aol.com

Date:

5/8/2002

Comment

does anyone know a specialist for vulvodynia in miami or ft.lauderdale? thank you! please e-mail me the name at karbethw@aol.com

Name:

Jennifer

Email:

Date:

5/8/2002

Comment

BURNING TONGUE leads me to think Sjogren's. Doc on Miami Beach, Dr. Betty Bellman Dermatology...a huge portion of her practice is vulvodynia. She is very nice and very empathetic.

Name:

LIZ MACK

Email:

Date:

5/8/2002

Comment

I AM JUST HOME FROM SURGERY. I HAD MY BARTHOLIN'S GLAND REMOVED, THE MUSCLES RELEASED FROM A PREVIOUS VESTIBULECTOMY, AND I HAD ANOTHER VESTIBULECTOMY WHERE THE SKIN WITH SCAR TISSUE THAT HAD TORN FOR YEARS WAS REMOVED AND MORE VESTIBULITIS (RED SPOTS) WERE REMOVED. SINCE THERE WASN'T MUCH SKIN TO WORK WITH THIS TIME MY DR HAD TO GET HEALTHY SKIN FROM THE PERINIEL AND ANAL AREA. NEEDLESS TO SAY SITTING ISN'T VERY COMFORTABLE. THE DR SAID THIS WOULD BE THE LAST TIME I COULD HAVE THIS KIND OF SURGERY DUE TO LACK OF SKIN. I HAVE DELT WITH THIS SINCE 1986 AND I JUST HOPE AND PRAY THIS TIME WILL DO THE TRICK. KEEP ME IN YOUR PRAYERS. I WOULD LOVE TO FINALLY HAVE A NORMAL SEX LIFE WITH MY HUSBAND AGAIN. NOT TO MENTION NO MORE PAIN AND TEARING! I WILL KEEP YOU POSTED.

Name:

Kathy

Email:

Kpnewman54@aol.com

Date:

5/8/2002

Comment

To Becky who posted on 5/7. Go to GO4HOPE.com, click on "What is BMS" on the left side of page under HOME. It says there is such a thing as burning tongue...BMS...Stomatodynia. Read about it and see if it describes any of your symptoms. Good Luck

Name:

Kim

Email:

Date:

5/8/2002

Comment

I have sharp pain on my left side of my vulva. The pain started last year in March, and the pain would come and goes. I have seen three doctors. One of the three doctor diagnosed me with vaginitis. The pain would go away for a while, then it would come back. The other doctor said that it was a yeast infection. At the moment, I am just scared not knowing what I have. My girlfriend died from cervical cancer two years ago. Doctors keeps telling me that there is nothing wrong with me. I know that the pain is real, and it is not in my head. Does anyone know of a good doctor in the San Jose area in California.

Name:

Email:

Date:

5/9/2002

Comment

Judy - The woman running the vulvodynia research project at Robert Wood Johnson is Dr. Gloria Bachmann. I have no idea if the study is still open, but you can find her contact information of their website. Perhaps, if you can't get an appointment with anyone at RWJ, they can recommend someone to you.

Name:

Diana

Email:

Date:

5/9/2002

Comment

Kim,I don't live in California but I have heard really good things about a clinic in San Jose. You can check out the information at http://www.helenahealth.comHope that helps.

Name:

M.

Email:

medusa_m5@hotmail.com

Date:

5/9/2002

Comment

Hi Leanne! (and everyone)I just wanted to say that I made a series of 8 appointments today for interferon-a injections. I start on May 23rd. I have to say that I'm quite scared, but if I can get better, the injections will feel like a piece of cake compared to how I've felt for the past 2 years, no matter how bad they are!!!I, of course will post my progress. Think of me at 5:00pm on May 23rd . . .

Name:

Leanne

Email:

lfhstarr@aol.com

Date:

5/10/2002

Comment

M-Congradulations and much success with your interferon shots. It was exactly 2 years for me when I received them and your recent website on the interferon and how many women are lacking the ability to produce the interferon normally in there body this has been a successful course of treatment. After all these years of recovery I am saying wow...maybe thats why, but then of course they dont know why women cant produce this normally.....in some cases anyway...Good Luck M>>>>>My prayers are with you. Judy, I saw a post here about Gloria Bachmann at Robert Wood Johnson, I have heard thru the grapevine that is correct information and like the post said, maybe she can get you to someone.....Be persistant....I think all of us can relate to having to be persistant....to get our selves help....Good luck to your husband as well to recover from his surgery....To everyone: I just want to say regarding interferon. I know when you read about that treatment its scary and you see that there are side effects. I had this treatment myself....It does cause you to have flu like symptoms for about 36 hours...Feverish/sore joints.....I still worked....and of course getting a needle there wasnt the greatest,,,,but it did not hurt nearly as bad as the vulvadynia/v vs....I know it cant cure everyone...but I will say this is one treatment that cannot make you worse...even if it doesnt work....thats a good thing. When I got to Robert Wood Johnson myself back in 1995 (originally) I had been fried by other treatments....Also, I would like to say that if you have this condition and you even start to have an hour of relief...then maybe a day of relief...then maybe 2 days of relief...you are getting better....I had burned 24/7 for 2 years....like someone had a torch to me....I thought dying would have been easier at that point....I prayed a lot...so please everyone.....I know this is frustrating and so many options, but please, never give up...and if you get better and recover....do all you can for others....God Bless & Im rooting for each and everyone of you...including your families...I know it effects everyone.....

Name:

Becky D.

Email:

roxdavis@yahoo.com

Date:

5/10/2002

Comment

Jennifer...I've tried to email you and I guess your email address changed..Just wanted to say hi and see how you're doing...send me an email if you get a chance!

Name:

Reesa

Email:

reesadz@yahoo.com

Date:

5/11/2002

Comment

Dana had asked about aci-gel. I used it once as prescribed by Dr. Gae Rodke - I believe she said that the ph returned to "normal" but it didn't change anything as far as how I was feeling. Also, someone asked about Atarax - I tried that as well. For me, it dried me up so much that my nose bled and my vulva was so dry it chafed and iched like crazy. THat is just my personal experience though. Anybody try neurontin? That's what I took most recently, but it hasn't helped and I believe I am experiencing a side effect of lower back pain from it.-Reesa

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/11/2002

Comment

Reesa: Did the Aci-Jel burn or irritate your tissues? That's what I'm afraid will happen to me since it has happened with so many other meds (except thankfully Estrace).

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/11/2002

Comment

Reesa: Did the Aci-Jel burn or irritate your tissues? That's what I'm afraid will happen to me since it has happened with so many other meds (except thankfully Estrace).

Name:

Pamr

Email:

cqyarbro@hotmail.com

Date:

5/11/2002

Comment

Does anyone here with vulvodynia have any of the following problems/symptoms: Urinary problems, backaches (lower, middle, upper), constipation/diarrhea, sleep disturbances, fatigue, headaches, memory problems, dizziness, restless leg syndrome, sensitivity to light/sound/touch?

Name:

Heidi

Email:

petriemb@muohio.edu

Date:

5/11/2002

Comment

I was wondering if anyone knew of any good physicians who treat vulvar vestibulitis in the Cincinnati or anywhere in Ohio areas? I am currently going to a doctor but receiving no help, and he is very mean. I was diagnosed about two years ago with VV, when I was 19 years old. I am 21 now and suffering more than ever, please someone help me I cannot exercise very well, I cannot wear anything but skirts, the elavil is not working, I cannot sleep at night, I can barely even go to classes.(I am in college). Please, anyone who knows of anything I would greatly appreciate it. I also have juvenile diabetes and everything is so complicated. Please help me...

Name:

Email:

Date:

5/11/2002

Comment

to susanne and anyone looking for temporary relief...i have had this thing since january and i'm seeing a doctor in a few weeks...anyways i had pain all day at first but recently i've been taking herbs and ordered emu oil from a site online...the emu has really helped alot and is taking the edge of pretty well, at least until i see a doc

Name:

W

Email:

wably@hotmail.com

Date:

5/11/2002

Comment

I must be the luckiest woman alive. I am 32 and married for almost 11 years, no children. Until 6 years ago, I never really had any problems with vulvodynia except some slight tearing during intercourse very early on, which I dismissed as "normal" for first time sexual experiences (believe it or not). Other symptoms of vulvodynia appeared about 6 years ago -- but I stuck my head in the sand, just hoping "whatever it was" would go away by itself. I finally reported my symptoms to my gynecologist in 1999 who, after testing me for everything including STDs and yeast, did a biopsy and still came up with nothing. Thank God for her, she referred me to a wonderful nurse practitioner at Graduate Hospital in Philadelphia, Susan Kellog Spadt, who was the first person to seem to actually know a little bit about what I was going through, and diagnosed me with vulvar vestibulitis. She started me on an antibiotic (doxycyclene) which was for me a magic pill, then later gave me a series of Kenalog shots for fissuring, along with instructions on how to regularly stretch the musculature attaching to the pelvic floor. These helped a great deal, but I had a sort of unexpected breakthrough when I got the flu in Feb 2000. I haven't heard of anyone else having this experience and how it apparently has "cured" me. Shortly after I began treatment with Ms. Spadt, I started an exercise program to deal with my weight problem (gain 85 lb+). I got the flu that winter and decided to go off the doxycylene for a short period so I could take flu meds. After I got over the flu, I delayed going back on the doxycyclene out of morbid curiosity to see if I was "cured". Meanwhile, I kept up the exercise program, which was 45 min of hard cardio work at least 4 to 5 times a week, plus weight training 2 times a week, which meant I began drinking a LOT more water than I ever used to. This was not intended to "cure" myself of the vv, but I noticed a pattern after about 4-5 months of being off the doxycylene: the moment I stopped exercising for a week or more, the vv would flare up with a vengeance. However, as long as I kept up a regular exercise routine, I was symptom free except for the fissuring. I received a series of Kenalog injections over a period of months for the fissuring. I also began using stretching exercises for the pelvic floor at the same time. To this day, 2 years later, the pattern holds. As long as I exercise at minimum 30-45 minutes for 2-3 times a week, I am asymptomatic -- when I don't exercise, I begin to get weekly flare ups. The fissuring is all but nonexistent thanks to the Kenalog shots, adequate foreplay and me being relaxed about sex instead of tense (and fearful), as well as regular daily stretching exercises. I am still overweight by 60 lbs or so (oh well) because I do love food -- I have not modified my diet nor am I on any medications, but I felt this was interesting enough to mention because I don't know anyone else out there like me --?? I was on lots of different antidepressants from the time I was 17 through age 28 but finally got off all of them in 1998, and the only birth control pills I've ever taken long term have been Lo-Estrin and Ortho Tricyclen, which I'm still on with no apparent problems. Again, my heart goes out to everyone here and my prayers are with you, so you know now why I feel like the luckiest woman after my brief bout with vulvodynia -- I think I might actually be cured! THANK YOU SUSAN!!!!!

Name:

D.

Email:

Date:

5/11/2002

Comment

W.,It is interesting what you mention about the exercise. A great friend I met through this whole ordeal (who also has vv), has found the exact same connection. She is on prozac, which has taken almost all of her pain away. Yet if she does not exercise several times a week, her pain begins to flare-up. As long as she exercises, she feels great! She also has fibromyalgia. She thinks there must be, for her, a connection between the amount of seratonin released in her body and the pain level she feels. That is why she thinks the prozac has been so helpful.If I exercise too strenuously, I actually flare-up. Yet I am still in the "recovery" stage, and as I continue to improve I find that my body can handle more intense exercise. I just thought I would report this experience in case it helps someone else.

Name:

W

Email:

wably@hotmail.com

Date:

5/11/2002

Comment

D, it does sound like your friend has a similar situation, except for the fibromyalgia, which I thankfully do not suffer from. I was very happy to hear similar good results in others w/ regard to exercise. I used to be on Prozac (and Zoloft, and Paxil, and Effexor, and...) in the early to mid 90's, but not for pain management - in my case, it was a chronic bad attitude masquerading as depression. However, I find myself wondering all of a sudden if an important relationship may exist between what exercising normally produces (endorphins) and the action of drugs like Prozac, whose main effect, however it is accomplished, is the elevation of dopamine levels in brain chemistry - but I know next to nothing about hormones, really. I thought I read somewhere along with the autoimmune theories that vulvodynia could be related to hormonal changes, and not necessarily just reproductive hormones (can't remember)? In any case, I sincerely hope that you continue to make headway and perhaps as your body grows better able to tolerate exercise it may prove helpful in your case - that was my goal in bringing it up, simplistic as it may sound. I promise I'm not an exercise freak trying to use this forum to preach it as a cure-all -- I know it's not. Nobody hated (and still hates) regular exercise more than me. I still have to force myself to do it! Thanks for feedback...

Name:

Kat

Email:

katngus@yahoo.com

Date:

5/12/2002

Comment

Aloha Everyone,I am new to the website. Thank you for all your comments, experiences and advice. I live in Hawaii and know that there are no doctors here to help me with my vulva pain. Does anyone recommend a good doctor in CA? My problem has gotten a little better (I don't swell up as much anymore) but I still have that awful cut at the 6'clock position when I have intercourse. It's making me depressed and really moody. No wonder everyone is on Paxil or Prozac! Thank god I have a great man that loves me. I hope he stays with me. Has anyone had the tear problem fixed or cured????Let me know. Mahalo.

Name:

Frank B.

Email:

Date:

5/12/2002

Comment

To Kat: My wife has the same terrible reoccuring tear, six o'clock position. She is forty one years old, has had three children and began tearing about two years ago. I have written since guestbook thirteen. Just to let you know quickly what she has been through, her Gyn said he had never seen such a problem and at our request he operated repairing some muscle and forming a new scar in the area of the tear. This did not help at all, neither did the Elivil or many other medications and lubricants. I am not writing to upset you but rather to inform you of my wife's experience so far. There is always hope for meaningful treatment so try to think positive.For the time being it helps us to avoid any position that puts pressure on that area, we pretty much use the missionary position nothing from behind. I won't go into detail but while lubrication is always a great idea it doesn't seem to lessen the damage. For whatever reason the skin is very tight and thin . You have found a good site here, there are many smart Ladies who read and post. Best of luck to you and Happy Mothers Day to all you Mommies!!

Name:

Jennifer

Email:

Jennifer68@adelphia.net

Date:

5/12/2002

Comment

Becky, I sent you an email...I haven't heard back, so I thought I would post here to make sure you have my new address. Look forward to hearing from you.To the woman that wrote about the doxicycline...it was magic for me too. It is used by many rheumatoligists for rheumatoid arthritis, but not trully accepted by the medical establishment.

Name:

withheld

Email:

imstarvingus@yahoo.com

Date:

5/12/2002

Comment

Is there any way to delete a comment that I made in one of the guestbooks (#5) some years ago? I would really appreciate not having it show up in all the major search engines. My mistake, but would like to be able to go back and delete it. Please advise. I used a different email address at the time, can send it to you via the address above if someone can delete it for me. Thank you.

Name:

To Jennifer (from Guestbook 16)

Email:

From Alexandria

Date:

5/12/2002

Comment

I would just like to say thank god I read your recent post. Becaused I totally know that my vulvodynia is infectious and can't seem to find a doctor to believe or help me. I am going to see your doctor in a few weeks and pray that I get rid of this like you did. I was treated in the past with flagyll (even though my cultures were negative) and when I took the medicine my vulva would feel like it was trying to attack the infection but just not getting enough and therefore I still have this NIGHTMARE. And when I bathe with water I feel better. So I to believe that this is clearly an infection (it totally feels like one). My major pain is in the area in between my lip area. Burning, itching all of the time. Well hopefully your Dr. could help me. Thanks for the info.

Name:

Jennifer

Email:

Date:

5/13/2002

Comment

Alexandria, what do you mean by you know your vulva was trying to attack it while on flagyl? When meds were working for me, my vulva simply felt better, and the redness was reduced? Glad I was able to help, if nothing else at least you know there are other people out there that firmly believe it can be caused from an infection.Good luck with Toth. Tell him I said "hi".

Name:

Colleen diven

Email:

c_diven@hotmail.com

Date:

5/13/2002

Comment

I am glad you have this website, but I would like to contact others who are suffering. If you could be any help, I would appreciate it. Thank you

Name:

W

Email:

wably@hotmail.com

Date:

5/13/2002

Comment

TO FRANK B responding to your 5/12/02 post: Although I misspoke myself in my first post (I was diagnosed with a subvariant of vulvar dermatoses not vulvar vestibulitis), I suffered from the same exact 6 o'clock tear as your wife for 9 years out of my 11 year marriage, and the only thing that worked for me was several rounds of Kenalog injections at the location where I was tearing, combined with twice daily minimum stretching of the musculature of the pelvic floor (which I still do today). At the same time I was getting the Kenalog injections, my husband and I were asked to abstain from intercourse for certain periods of time immediately following the injections and to then try using a muscle relaxant (taken orally) about 45 minutes before intercourse, during the periods of time when we were supposed to attempt intercourse.I have not had the Kenalog injections for over a year now, and I no longer need the oral prescription muscle relaxant prior to intercourse. The only thing I do for maintenance now is stretching 2x daily, drinking 8-10 glasses of water daily, and getting vigorous exercise for 45 min at least 2-3 times a week.I used to tear at the 6 o'clock location every single time my husband and I had intercourse no matter what the position for 9 years of our now 11 year marriage, and for the last nearly 2 years I have not had a single tear in any position so long as we undertake adequate preparation - well, you know!!!Frank, since your wife has had surgery, I don't know if what worked for me might help her as I have not had surgery, but it seems to have finally eliminated the tearing, pain and bleeding. My husband was, and is, an incredible, wonderful angel of a man -- you sound equally committed (thank God for men like you and my husband). I wish you the very best and hope you won't ever give up -- your wife WILL get better, you must take a very systematic, patient, determined, but cautious and well informed approach before deciding if you want to risk certain courses of treatment. While many women seem to benefit from antidepressants, I had deeply personal and well-informed reasons for saying no to that avenue of treatment, which was one of the first suggestions for my treatment. I eventually found another way.I was treated at Graduate Hospital in Philadelphia -- the Director of the Vulvar Pain Service at The Pelvic Floor Center there is Susan Kellogg-Spadt, CRNP, Ph.D. 215-893-2643. I saw her for over a year and she is a compassionate, dedicated professional who truly listens to her patients, is involved in the continuing education and research on vulvodynia, and does NOT take a "one thing cures all" approach. I was SO lucky to have been referred to her by my gynecologist and my insurance covered everything.Sorry to write so much. My thoughts & prayers are with all of you.

Name:

To Jennifer

Email:

Alexandria

Date:

5/13/2002

Comment

What I meant by the flagyl was that I felt like the infection was getting better but than it never did. Oh by the way, let me ask you about your insurance. Did you have an HMO who paid the 80% that Dr. Toth charged? And did your prescription plan pay for your intravenous drugs? I have seen two different doctors for this (actually 3 doctors in one office but I count that as one) and they tried to actually send me to a psychiatrist and told my mother that I don'e have an infection but a psychological problem. Well all that to say I am not crazy and I can't wait to see what is causing my infection. So anyway my gyno was unable to help and recommended I see a doctor for vulvodynia. So my question is that if my insurance does not have any of those types of doctors in my plan and my doctor requests that I go see that doctor than I would think they should cover most of the charges. One more thing, what were your symptoms (itching, burning,etc.) I also have itching inbetween my thigh area at times. Just wondering what you were feeling. Thanks so much if you can let me know.

Name:

To Susanne

Email:

From Alexandria

Date:

5/13/2002

Comment

I do not know what the word "flozzy" means (can you use another word to describe it) and I do occasionally get tears for no reason in that area. I am always sore and itchy sometimes. Is your pain constant or intermittent and have you seen a doctor for this yet?

Name:

M.

Email:

Date:

5/13/2002

Comment

A question for the women who have taken ELAVIL . . .I know a side effect of that drug is weight gain. For those of you who did gain weight, how many milligrams of the drug were you taking, and for how long ??Thanks!

Name:

Dee

Email:

Date:

5/13/2002

Comment

I have a few questions. What does everyone mean by "fissures?" Also the Emu Oil thta everyone is speaking of, is it taken orally or is it applied? How can we get it? What is the theory behind it, is it for a particular type of VV? I was also wondering, does anyone experience bad "stinging" when they have their period? I'm okay the first day, but after that, it really stings for a couple of days. I'm on birth control because when this first happened my cycle also got all screwed up. I don't need to be on it as a measure for birth control and would like to stop taking it to see if my cycle was normal again. Does anyone know if they are on BC beacuse their doctor feels that it is good for the VV?

Name:

M.

Email:

Date:

5/13/2002

Comment

Dee - A "fissure" is a tiny cut, or a split in the skin, almost like a small paper cut.Re the ELAVIL question I just posted to anyone with weight gain: in addition to how many milligrams of the drug you took, how much weight did you gain because of it????Thanks very much

Name:

To Jennifer

Email:

From Alexandria

Date:

5/13/2002

Comment

I am re-writing what I thought I sent today but don't see it in the guestbook, so if it gets repeated I'm sorry. Anyway, what I meant was that I felt like I was getting better when I took flagyl but never did because it was apparantly not enough or the right medication. What antibiotics did you take and why were you given them. Also what were you symptoms like? Burning, itching, etc. were they constant or intermittent and did you have any discharge. Let me know. Thanks in advance for the info.

Name:

Jennifer

Email:

Date:

5/13/2002

Comment

I had itchiness the first few years...along with irritation...the pain was constant, but at times worse than others. Sometimes it was like cut glass being pressed against me, or stinging bleach. What a nightmare. EVeryone wants to think we are crazy. I was sexually active with no problems (exceot for a few STD's) for eight years, and then all of a sudden when my vulva starts to hurt, people wanted to believe I was sexually abused as a child or feeling guilty about having sex, etc. How old are you Alexandria?

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/13/2002

Comment

Dee: I too used to have horrible stinging during my period. Then I started using topical Estrace and the stinging is gone, thank God, after 3 years!

Name:

Leanne

Email:

Date:

5/13/2002

Comment

M- I was on 10 milligrams of elavil and the maximum was 25 milligrams. That was while I was receiving the interferon treatment. I stayed on it for one year , then Dr Maylk slowly brought me off it. I did not gain a single pound while on that drug. I had a flare up once after 7 years and did the elavil 10 milligrams for 30 days and never gained weight. I think when women whom are taking the high doses have more of a problem or at least thats what ive been told. I also know that when im upset I never gain weight. Stress makes me loose weight and I had a lot of stress with this condition. I never noticed a single side effect except i felt tired in the beginning. Hope this helps.Frank-Ive been reading that good information on Dr. Susan Spadt. I ve heard from others that she is very recommended even by the specialists office I had seen several years ago recommend her today. The last woman whom gave you the details said she had been in pain for 9 out of 11 years of marriage sounds promising for women whom have suffered a long time with this disease...Bye the way, how come we never hear from Mrs. Frank B? Well, I hope maybe she can get some help...Dont give up....

Name:

Reesa

Email:

reesadz@yahoo.com

Date:

5/13/2002

Comment

Dana - The acigel didn't burn me - I was pretty surprised it didn't.-Reesa

Name:

Frank B.

Email:

Date:

5/13/2002

Comment

To Leanne: Believe me when I mention this site I hear from Mrs. B.. She thinks I post enough for the two of us. I wish she would check out the site once in awhile and exchange info., but she is busy with our daughters and other family and like many women puts herself last on the list. She thinks I'm too pushy and maybe I am. I love her and want more for her and us but the more I suggest the more she resists. I think as many so called experts claim to be of service to others you have to take care of yourself first. I won't go into the whole difference in sex drive and priorites thing, at this point I'm tired of fighting, frustrated and plenty more not too positive emotions. Still there is always hope she will realize life can be more rewarding by taking care of number one. That doesn't mean turn your back on your kids and be totally selfish. We have insurance, I retired and I'm here to help out with the house and meals and more. Hey my lovely wife if you read this how about it? Tough to break the patterns of our lives, I know but you only live once!!! Take care ladies...............

Name:

Laura

Email:

pinkfluff79

Date:

5/14/2002

Comment

Name:

Laura

Email:

pinkfluff79@aol.com

Date:

5/14/2002

Comment

Okie, I am so glad I found this site. I am 22 and started having the effects of vulvodynia when I was about 14. No one has been able to help me and test all come back negative. I have even been refered to a urinologist who was stumped. Last week I went to get my Depro shot and the RN told me I could have Vulvodynia. Reading through these post most of the problems are what I have to a T. Normally I will get pain out of no where or when I first start my period. I started taking Depo Shot last year so this cause me to have my period only once every 3 months which has helped with the pain a lot. I have to say from everyones post about Depo being bad I have to say it has worked for me, this and also taking baths when the pain starts as temporary relief. I almost cried when I read that people have the sam symptoms as me. My boyfriend I jsut left and I broke up cause he couldnt stand the fact that we wernt having sex and would constantly tell me it was all in my head and just a excuse. I am soo glad to see its just not me that has this issue. I am really curious to see if anyone can refer me to a doctor that deals with this in the SAN FRANCISCO, Bay AREA? Thank you soo much for coming out with your stories. It really helps us that think there is no hope, and that we are just freaks.

Name:

Kat

Email:

katngus@yahoo.com

Date:

5/14/2002

Comment

For Frank and the wably@hotmail.com lady on 5/13/02:Thanks for your input. Frank, cheers to you. Not having good/comfortable sex sucks. Wably, can you explain the exercises your doing? And can you ask your docter if she knows any one in California. Sounds like we all have the same problem. I feel for your wife Frank. If it wasn't for this damn cut, I could actually enjoy my sex life again. Thanks for your input.

Name:

To Jennifer

Email:

From Alexandria

Date:

5/14/2002

Comment

Jennifer- I am 29 years old and just had my third baby in January. The problem started after a vaginal infection I had back in March 2001. I went to the doctor because I had discharge and soreness and he gave me flagyl (4 pills for me and 4 for my husband). I felt like it was gone but then I got pregnant in May and started having some itching. My doctor assured me it was probably yeast because women who are pregnant get yeast infections so I was using monistat and terazole which made me feel worse. Anyway while I was pregnant this nightmare got so bad that I could not get out of bed and was very depressed. Anyway I kept telling my doctor that I had an infection so at the third trimester he prescribed me flagyll again (because they don't like to use it in the first two trimesters) but did not cure me and told me after I had the baby that I should see a vulvodynia doctor. It got to the point that I felt uncomfortable going to the office. I pray that this will be gone asap because its worse again and seems to be worse when I have my period. Its affecting my whole life. I have three beautiful kids that I really want to enjoy......

Name:

Jennifer

Email:

jennifer68@adelphia.net

Date:

5/14/2002

Comment

Alexandria, during my periods was usually the most painful time for me. Why do you think you got the original infection? If you go to another doctor, he will most likely be willing to prescribe you metrogel for BV, but just insist that you have had this on and off, and you want the flagyl orally so you can tell if it is working while you are taking it...that when you put the stuff inside of you, you have no idea if you still hurt because of something in the gel, or if it is not working, or if your discharge is different from the gel, etc. That is...if you want to try the flagyl again? He will most like prescribe 750 mg a day either by two pills or three. Did you take the four pills all at once? 2000mg at once? That is a typical dose for Trich, I did not know they use it for BV, or did you have Trich? Don't answer if it is too personal, you can email me if you want.

Name:

Jennifer

Email:

Date:

5/14/2002

Comment

That is 750mg a day for 5 or 7 days.

Name:

To Jennifer

Email:

From Alexandria

Date:

5/14/2002

Comment

Jennifer. My cultures were negative so they called in a "non-specific bacteria" and gave me flagyl. Thanks for the info.

Name:

W

Email:

wably@hotmail.com

Date:

5/14/2002

Comment

TO KATNGUS@YAHOO.COM: Here are a few of the stretching exercises I do every day (I hope the descriptions make sense - diagrams are easier) (A) Lie on back with knees raised and feet flat, then place right ankle across the left knee, and pull left knee toward the chest, repeat on other side. (B) Lie on back with legs flat, then bend right knee and pull it with both hands toward the chest, hold for a few seconds, then switch to left knee & repeat. (C) Lie on back with legs flat, lift right leg and keeping leg straight, cross it over left at a 60 to 90 degree angle while keeping shoulders flat on the floor and left leg straight. This next one's strange, but believe me it has a valid use -- if you're in extreme pain it may not be very easy to do at first, but hang in there (if I can do it, so can you) (D) sit on toilet, insert right thumb into vagina and firmly press into the left wall of the vagina. Hold for a few seconds, then repeat on other side. In my case, there was a big difference between the left wall of the vagina, and the right - the left was a rock wall and doing the above exercise hurt the left side like hell for the first few weeks.Except for the last one, most of these stretches are also supposed to be good for the lower back. What I learned was that many of the muscles being stretched in the exercises above also have a great deal to do with supporting & flexing the musculature of the pelvic floor and vaginal walls. If these muscles are short and too tight from physical inactivity and/or injury (both were the case w/ me) there is very little "give" b/c everything is drum tight, and so fissuring during otherwise "normal" sex can be one of the painful results when the skin at the vaginal opening is tissue thin due to other vulvar dysfunction or disease. In my case, about 10 years ago I had severely strained and injured my left gluteal muscle extending all the way down into my left hamstring muscle, then for whatever cause began suffering from thinning tissue and vulvar dermatoses. The Kenalog shots were done right at the 6 o'clock spot where I was fissuring, and they did work in my case to thicken the tissue there and then the stretching exercises helped to loosen up the old injured muscle and keep it loose. The Kenalog shot stung pretty bad, but it's not as bad as it sounds. I'd take that over the pain of fissuring any day!As I've been reading this site, the biofeedback methods Dr. Glazer seems to be using make a good deal of sense to me in light of what I said above, so many grateful thanks to him for advancing the treatment and awareness of so many women who suffer!KATNGUS@YAHOO.COM, I am going to call Sue Spadt (she's an LPN & PhD, by the way, not an M.D. - I saw someone above call her "Dr.") to ask if there's anyone she recommends for my sister who is now suffering and lives in Utah. I will also ask her if she knows of anyone in your area who you might see. I will let you know. In the meantime, hang in there.

Name:

michelle rumball

Email:

makin_groceries@yahoo.ca

Date:

5/14/2002

Comment

Name:

michelle rumball

Email:

makin_groceries@yahoo.ca

Date:

5/14/2002

Comment

I am a sufferer in the Toronto, Canada region. Does anyone know anyone who treats v.v. up in this area?

Name:

Karen

Email:

faber@attbi.com

Date:

5/14/2002

Comment

I just wanted to make a comment about Emu oil. Be VERY careful with it. I tried it and it made the burning so much worse.

Name:

Lashaun

Email:

jlkrlb@yahoo.com

Date:

5/14/2002

Comment

Please help me!!!! I too have been to several physicans (at least 15) over the past 4 years. After thinking and being told that I was suffering from recurrent yeast infections, taking just about every medication there is for yeast over the past 4 years, and being tested for everything under the sun related to my compliants I now feel that I have found my diagnosis. I can not deal with another doctor that has no clue of vulvodynia. Since I learned of this condition I have been to three more doctors, an Ob/Gyn, a dermatologist, and my general practioner. One told me that I should go to a research hospital such as Emory. However when I called, no one in the the departments that I was told to contact had performed research on this condition. Eventually I was given the name of a doctor in NC named Libby Edwards. I was told that this is the only doctor in the southeast that specializes in vular pain. Upon contacting her office I learned that her office doesn't accpet insurance. Does anyone know of a doctor in the vacinity of Atlanta that can help me. If I have to I will drive to NC, but I was trying to first find something closer because finacially it will be several months before I can make the trip. And I truly feel that I'm about to go crazy over this condition!!!! jlkrlb@yahoo.comUpon showing the dermatologist some info from the internet he did prescribe Premarin ( the estogen cream). I havn't really noticed a change in the month that I have used it. What else can I do or ask my doctor to prescirbe?Please Help!!!!!!Lashaun

Name:

Beth

Email:

bsharro@aol.com

Date:

5/15/2002

Comment

Hi All...Just have a quick question. I just got my first prescription for Xylocaine and was excited to use it, until I went to pick it up and the Pharmacist said it is DISCONTINUED.Does anyone know about this or what I can get as a substitute?Any info would be GREATLY appreciated.Thanks, Beth

Name:

Kathi

Email:

ulfdreier@sssnet.com

Date:

5/16/2002

Comment

I started having problems 2 years ago, redness/burning, pain to speak of only during intercourse and swelling afterwards. 3 weeks ago, after changing my diet to high fiber and soy products (to lower Cholesterol), my skin went totally wild. I started digging in the internet, which brought me to this site.I suspect, that the high oxalate levels in wheat bran and soy milk are to blame for this worsening. I have to be on antibiotics constantly, because of Lyme disease. I did have lots of yeast problems, but not recently. I`m taking diflucan for prevention and eat lots of youghurt and probiotics.My first approch will be the Low Oxalate Diet. My question:is it better to take Magnesium/Calciumcitrate in a combination or seperately (2 ours or so)? I read that if one takes it together it will conect to each other and the body will not be able to use it?Does it make sense to use Estrace, even if I did have no improvement with BCP? Estrace is burning, will this pass and how long does it take to work if it does? May Estrace lead to blood clots? I`m at risk. If anybody knows a place to go in OH, please tell me. K.

Name:

D.

Email:

Date:

5/16/2002

Comment

Could someone please explain what Kenalog shots are? I am very curious, and any advice would be extremely helpful. Why are they used? THANKS!BETH, you ask about Xylocaine. All I can tell you is that I get Lidocaine (I believe the same thing) from my pharmacist. He compounds it for me in a neutral base, and it is not irritating at all. Check w/ your doctor to confirm they are the same thing. It is the numbing cream, right?

Name:

Jennifer

Email:

Date:

5/16/2002

Comment

They give you shots of Kenalog (TRIAMCINOLONE) is a corticosteroid used to reduce itching, redness, and swelling associated with many skin conditions. You can get it as an injection directly into the vulva tissue, or also as a topical ointment. I had the shots, and they did help.One comment about the xylocaine, it did not give me much relief...maybe others have had different results.

Name:

miri

Email:

keetvulee@hotmail.com

Date:

5/16/2002

Comment

Kathi, I had burning with estrace at first too. i just reduced the amount and also put some vitamin e oil on the area and that took care of the irritation.

Name:

Kathi

Email:

ulfdreier@sssnet.com

Date:

5/16/2002

Comment

Beth, there was an "over the conter ointment"," Vagistil". I don`t know about preservatives in that, hopefully it is not the thing you were already looking for. It works perfectly on mosquito bites, too :o). Kathi

Name:

Nancy R

Email:

nancy72@earthlink.net

Date:

5/16/2002

Comment

Hi all. Not sure yet if I have VV. Had a confirmed yeast infection in February that went away with Diflucan and Terazol. Then in April I had the usual yeasty feelings (vaginal and rectal itching). After four days of Terazol 7 and Mycolg II I went nuts and used gentian violet and burrow's solution and yogurt with acidopholus powder intra-vagnally and intra-rectally in addition to finishing the Terazol. I swelled up and some skin peeled off and the itching got worse. It is still present but three docs have found no yeast. I feel mostly itchy and slightly raw/irritated in places. Sitting is the worst (I also have internal hemorrhoids which I recently found out about). I had also been convinced to put grapefruit seed extract and tea tree oil on me vaginally and rectally and they both burned and to insert boric acid capsules in both ends. I am very scared this is VV but right now my GP is saying this is hopefully just a bad allergic reaction to all of the things I put and to keep everything away from there for at least a month (it will be two weeks w/o any creams tomorrow). I have read a lot about the onset of VV starting with the use anti-fungals. I am so scared and upset that I can't be intimate with my boyfriend and that I did this to myself and have damaged myself forever. I read mostly about burning and tearing and pain but what do docs use to treat the itching feeling? It is maddening. It does not hurt to use tampons (they are actually better b/c the sweating and friction from a pad makes me feel worse). Does anyone just "heal on their own" if they have a reaction to the anti-fungals? The very patient Dr. Glazer gave me a phone consultation and said that this may be the case but that it can take months and months for the irritation to heal. I am also supposed to see Dr. Toth in NYC next week. If anyone can email me privately about their experinces with him I'd greatly appreciate it (nancy72@earthlink.net)Depressed and itching like mad,-Nancy R

Name:

Nancy R

Email:

nancy72@earthlink.net

Date:

5/16/2002

Comment

Hi all. Not sure yet if I have VV. Had a confirmed yeast infection in February that went away with Diflucan and Terazol. Then in April I had the usual yeasty feelings (vaginal and rectal itching). After four days of Terazol 7 and Mycolg II I went nuts and used gentian violet and burrow's solution and yogurt with acidopholus powder intra-vagnally and intra-rectally in addition to finishing the Terazol. I swelled up and some skin peeled off and the itching got worse. It is still present but three docs have found no yeast. I feel mostly itchy and slightly raw/irritated in places. Sitting is the worst (I also have internal hemorrhoids which I recently found out about). I had also been convinced to put grapefruit seed extract and tea tree oil on me vaginally and rectally and they both burned and to insert boric acid capsules in both ends. I am very scared this is VV but right now my GP is saying this is hopefully just a bad allergic reaction to all of the things I put and to keep everything away from there for at least a month (it will be two weeks w/o any creams tomorrow). I have read a lot about the onset of VV starting with the use anti-fungals. I am so scared and upset that I can't be intimate with my boyfriend and that I did this to myself and have damaged myself forever. I read mostly about burning and tearing and pain but what do docs use to treat the itching feeling? It is maddening. It does not hurt to use tampons (they are actually better b/c the sweating and friction from a pad makes me feel worse). Does anyone just "heal on their own" if they have a reaction to the anti-fungals? The very patient Dr. Glazer gave me a phone consultation and said that this may be the case but that it can take months and months for the irritation to heal. I am also supposed to see Dr. Toth in NYC next week. If anyone can email me privately about their experinces with him I'd greatly appreciate it (nancy72@earthlink.net)Depressed and itching like mad,-Nancy R

Name:

judy

Email:

Mitzimitz@aol.com

Date:

5/16/2002

Comment

My leads with robert wood Johnson did not work out. They have a study for vulvodynia, but it is not for me. I can't go now because my husband is ill, it is twenty six weeks, it starts with diet and then they do other procedureee. I need relief sooner than that, besides I can't commit to twenty six weeks right nowThe nurse gave me a name of Dr. in the oby clinic who is supposed to treat people with this, but when I called them, \they said he doesn't do it. I goy a whole run around. Then I called a Dr. listed on a list that I got from NVAand from someonne on the internet, they don't eeven answer their phoneI called another Dr. and when the nurse heard what my insurance was, she made an excuse and told me to find some one else. Has any one got any suggestions for a Dr. in central Jersey North Jersey or even NYC. I would appreciate it.

Name:

Email:

Date:

5/16/2002

Comment

Emu oil has made a tremendous difference in me. I purchase mine from Clover, too. First, I ordered it from a place in Texas, but did not use it because it had a strong odor. I called him and he told me his chemist added something to it to cover the odor. Clover's does not have an odor. She said the birds have a different diet in Texas. I have used it about 5 months and each month I get better. I don't tear like I used to either. Frank your wife really needs to try this. It heals and toughens the skin. It does take time. My burning is about a 1 now. This past month I have hardly had a burning sensation. I use olive oil for a lubricant and Aveeno soap to bath the vulva. The rest of my body I use Vanicream soap. The Aveeno is gentler and that is why I use it on the vulva area. A handheld shower head is a must and rinsing after urinating when I am home and drying with a blow dryer helps, too. If the Emu oil burns then keep trying it for about 2 weeks to see if it quits. Anything will burn irritated skin. It takes time to heal. Just wanted to share with all of you. A year ago, I could not stand to wear clothes of any kind on that area. Still not able to wear jeans, tho. Sex does not hurt, and as time goes by it feels better and better. My husband can touch me in ways he never could before. This means even before I had this flare up 2 years ago. It is worth a try to use emu oil.

Name:

Frank B.

Email:

Date:

5/16/2002

Comment

Concerning Emu oil and other things: I am really happy some of you have found relief. I can't remember sex before all this happened and I'm sure my wife is more upset than I. She is not in a frame of mind to read the site here and I cannot suggest anything at this point. I have urged her to check it out once in awhile and seek out different Gyns also. There is always a chance one of them will hit on something useful. I can't force her to try new things or doctors. Seems when I do get her to read something here she finds fault with it. I love her and wish she did not have to suffer with the pain or annoyance. I am concerned that mainstream medical science cannot offer something better than Elivil, assorted hormone, anti fungal, anti puritic and anti biotics. What exactly is causing these symptoms? Amazing amounts of money spent on war, space and ocean research, how about human suffering? More could and should be done, you should not be driven to seek out possibly dangerous self treatments. Stay strong...........

Name:

Marisa

Email:

Date:

5/17/2002

Comment

Name:

Marisa

Email:

magongora@hotmail.com

Date:

5/17/2002

Comment

I'm a little hesitant to post something for fear that it's been posted before and the question already answered. About 3 weeks ago I underwent the steroid injection treatment. Now my inner labia have hard ridges where I can see the cream. Is this normal and does this go away? I'm a little worried that I made a mistake and that this is irreversible damage to my vaginal area. Did anyone go through this procedure? If so, is this a normal reaction and is there success in this treatment? Any comments would be appreciated because I'm getting nervous. Thanks. Marisa

Name:

Dee

Email:

Date:

5/17/2002

Comment

Could someone tell me where or how to purchase the Emu Oil from "Clover"? I really want to try this. Is it expensive? I'd oay anything if it helped, I was just curious as to what to expect. Thanks.

Name:

Email:

Date:

5/17/2002

Comment

Susanne, it sounds like you have a Bartholin gland cyst. I had one and it was very painful and hard to sit. It drained on its on. I was having sex with my husband and it just I guess burst. I felt a warm rush of fluid. After that it was better, but I had other problems which has taken more time to heal. I could sit more comfortably, tho. You can have the cyst drained. Next time I get that feeling I will do that. You can get the emu oil if you email Clover at wildrose@bitterroot.net or phone nuber is 406-363-1710 Her web page is www.wildroseemu.com

Name:

Lynn

Email:

Date:

5/18/2002

Comment

Hi all. I have not been on this site in months! Perhaps 4-5 months! I know there are a lot of new people on this site that don't know who I am. But Stephanie, Laurel, Christine and Frank all know me. I just want to share my story with everyone. It's WAY TOO LONG to get into; so I'll make it breif. I'll just tell you what helped me out and then I'll leave because I don't want to make a long post. For my vulva pain that was on the out side of the vulva- I'd put on vanicream 2 times a day(one in the morning after a shower, one in the evening after a shower). This regimen made me be better in 2 months. The inner pain(vestibulitis) I had a "Partial Vulvectomy" to get rid of that area. It healed up in 7 months after that. I take "Ultimate Plus-enhanced for women" and "Easter- C Complex" vitamins from High Health stores. I can eat anything I want, whenever I want and not have to worry about any more pain. I was given (sorry I forgot the name of the medication, but it was an antifungal to kill whatever it was that was causing that pain down there). With all this, I'm just feeling like a normal person again. I can't complain. I'm sure I can have sex again and all is just well. If anyone is concidering surgery, I would definately recommend it. I had the surgery a year and a half ago. 7 months later- it felt normal again. The only thing was, it'll hurt when I eat certain foods, then the pain will go away a day later. Then the Dr. gave me that antifungal med and I take these vitamins, I have no more pain! Anyone has any questions or comments, leave me a message. I'll get back on this line tomorrow. Goodnight.

Name:

Marylou

Email:

mdesigns@bigpond.net.au

Date:

5/18/2002

Comment

Hi, Dr G. I have been suffering from vulvadynia for two years. The first year my pain was irratic and I thought I had thrush all the time. But for the past year I have had non stop burning of the vulva area. I am now on a low oxalate diet and taking calcium citrate daily. I am also seeing a homeopath, my gynea. I do pelvic floor excercises daily...almost. I did go and see a man in Sydney who does the biofeed back programme. I did not relate well to him so did not take up the programme with him. Who else does it in Sydney besides M. J. There are too many school's of thought on recovery of Vulvadynia...who are we to listen to and what is going to work. I feel desperate most of the time. I am 39, am married and have 3 beautiful daughters. This is so unfair. HELP PLEASE!

Name:

Dr Howard Glazer

Email:

Date:

5/18/2002

Comment

I am forwarding this post to the vulvodynia.com guestbook. Please consider helping Amy with her research.Howard Glazer Ph.D. Hi, members of vulvodynia-support, Some of you know me and some of you don't. I'm a sociologist from the University of Alberta in Canada, and I've just gotten a grant to do a research project on how vulvodynia affects women's self-images and social lives. I'm focusing on what it's like to grow up as an adolescent and live as an adult with early onset (primary) vulvar vestibulitis and vulvodynia, and how it affects how we think about ourselves as women, our self-image, our relationships (both sexual/romantic and platonic) etc. What I'd liketo do over the next year is to talk to women in person about the above. My focus here is on women who had vulvodynia or vestibulitis (whether they knew it or not) since before they first became sexually active orattemptedintercourse - i.e. women who've been dealing with this condition sincethey were children or adolescents. I'll be traveling around North America in order to do these interviews in person, both in the US and in Canada. My travel schedule depends on where the potential participants are - if there's a number of women with vulvodynia/vestibulitis in a particular area, then that's where I'll go. I'll be starting the interviews most likely in January 2003 and will arrange a schedule once I figure out where all the participants are. I want to use the results of this research not just to add to the medical literature on vulvodynia, but also to create an opportunity for women with vulvodynia to speak out about their lives, both to each other and to the wider public who may know nothing about this condition. In particular, Ihope this research will be meaningful to newly-diagnosed women or to women who haven't yet been diagnosed.Would you be be interested in meeting and talking with me when I am inyour area? The format is pretty informal - I would want to ask you some questions about your life and about how vulvodynia/vestibulitis fits into it, you can tell me as much as you want (and don't have to talk about anything you don't want to talk about), and we would end up talking for probably 1-2 hours (maybe more, maybe less - it's flexible). Interviews would be tape-recorded, and then I would later type up the interviews and destroy the tapes. Your identity will be kept completely confidential -you can choose to use a pseudonym if you want, and identifying informationlike city, occupation, etc will be changed. I have gotten clearance from the Research Ethics Committee at the my university for all this work and can give you more information about the project if you would like. If you might be interested in being part of this project, or if you wantto know more about it, just drop me a line at akaler@ualberta.ca or call meat 780-492-7579 (Mountain Time) during work hours. I also have a web page at the U of Alberta (which admittedly is not too exciting) if you want to see more about me - it's atwww.arts.ualberta.ca/socweb/faculty/kaler/kaler.htm. Thanks very much for reading. I really look forward to talking with someofyou!Amy Kaler Assistant Professor Department of Sociology University of Alberta 5-21 Tory Edmonton, Alberta T6G 2H4 Canada phone: (780) 492-7579\fax: (780) 492-7196www.arts.ualberta.ca/socweb/faculty/kaler/kaler.htm

Name:

SL

Email:

Date:

5/18/2002

Comment

I was diagnosed with vulvodynia about 6 months ago, my doctor's ofcourse had no idea what was wrong with me, but finally diagnosed me with it. I have the pain during sex, and exercise, other than that I feel okay. I have been given Xylocaine gel to use during intercourse, which makes it bearable. I have also just tried a new treatment, from a dermotolgist, I have had the area lazered, which is supposed to lessen the sensitivity in the nerve endings. I have only had 1 treatment, and will have 2 more to go. The dermatologist said most women find permanent relief, not 100% but about 50-60%. Just another suggestion.

Name:

Email:

Date:

5/18/2002

Comment

Lynn, it was good to hear about you again. I am the one that always posts on here without a name. I tried the vanicream then I told you about the soap. What kind of anti-fungal medicine did the doctor give you. Did you have yeast? Did your husband ever come home? I wondered because you said you think you could have sex. Did you ever find a good job? I am so glad you are doing so well now. I feel much better too. I am not totally well, but sex is great and I don't hurt all of the time. Emu oil is what is healing my skin plus other tricks I have learned from these sites. Thank heavens for the internet! Olive oil has been wonderful too as a lubricant. I apparently was allergic to other lubricants and that was part of my problem. Rinsing with baking soda water after sex helps too. Poor Frank sounds like things are not better for his wife. I really feel if she would try the emu oil for 6 months she would see a big difference. I put it on my son when he had a skin breakdown on his buttocks from sitting in a wheelchair and it is healing great! Let us hear from you again.

Name:

Email:

Date:

5/19/2002

Comment

To Amy Kaler:You have no idea what it's like to hear that a grant got wasted on a study like that!!! HOW DO YOU THINK WE FEEL AFTER DEALING WITH ALL THIS KRAP FOR A FEW YEARS??!!!Chronic pain has takes an anormous toll on every aspect of any human being's life - I'm SICK of hearing about women and their sexual/self image in relation to vulvodynia - I just want to take a ride on my bike!!!That one penny goes to a study like this rather than toward looking for a cause/cure for this condition is just a horror show for those of us who are suffering.You should be ashamed of yourself!!

Name:

Frank B.

Email:

Date:

5/19/2002

Comment

Regarding that study: I have to agree that the study seems very narrow in it's scope and does nothing in terms of cause or cure. The range of symptoms and suffering is broad and the study leaves out so much of what Vulvodynia is about. Just reading the site would tell someone how some Women can't sit, walk, exercise or rest without pain much less have sex. The up side of this study may be to shed more light on this illness and maybe spark more public interest. Where is the funding for the cause or causes? I would think that should come before collecting data on social impact.

Name:

Stephanie C.

Email:

scotton39157@yahoo.com

Date:

5/20/2002

Comment

Hello everyone! I also have not posted on this site in a very long time. Lynn, where are you? I still have some of the ladies email address, but I know yours changed. I was determined to quit feeling sorry for myself and do something else about this problem. However, I have done nothing but continue to pray and go on with my life. For some reason, I do not have burning everyday anymore. I have continued to use only Basis soap for sensitive skin that was recommended by my doctor. I also don't drink as much tea as I use too. My pain have dropped tremendously during sex, and I even WANT to have it now. As long as I use a good lubricant, I am fine. Sometimes I think we just have to stop trying so hard. I hope everyone is doing okay, and pain free days to all.

Name:

Valerie

Email:

layziegal@yahoo.com

Date:

5/20/2002

Comment

I am 19 and I was diagnosed with vestibulitis 3 months ago.I was searching for some common bond between depo provera and vestibulitis. I have been on depo for almost two years. I was wondering if there is some way to get a civil suit against the company that makes the drug.I am finally glad that I was diagnosed though, the horrible pain during intercourse without knowing what it was from was very scary. (Not to mention stressful in my marriage.) I have also recently(within 6 months) been diagnosed with Fibro-myalgia. I was wondering the connection with this and vestibulitis.

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/21/2002

Comment

Like Stephanie C., I am happy too to report much improvement in my condition. I can't believe how much the topical Estrace has helped me. I can now have almost totally pain-free sex with my husband after 5 years of pain. Plus, my burning/itching during my period is just miraculously gone. I haven't been able to wear just a pad in 4 years and had to wear tampons until the last drop of my period---it was truly awful. I hope that I only continue to improve as the Estrace works its magic. I hope and pray that you ladies can get similar relief too. It's a nightmare to suffer with this condition alone, and I'd be satisfied with just the emotional relief I get from this site. Physical relief now is just a bonus!

Name:

Mary

Email:

gallowaycreek@yahoo.com

Date:

5/21/2002

Comment

Hi Everyone,I've only posted twice before. I'm in with this twenty yearsand have lately tried Robin's success treatment at anglefire.comNizerol or ketonozole for yeast, 200mg one/day for a week, 1 everyother day/week, one every 3rd day for total 30 pills,$100. This is theonly thing that has ever helped. Sometimes I think it's all fungusand there's so many nerves down there the irritation of it makes youstart clenching and that's why the biofeedback sort of works andthen it turns into a nervous thing and that's why the anti-depressantssort of work but you can't stop taking them. It seems like there arelots of different fungus that live in tissue and a doc can't justswab it, charge 75.00 and see it. I've had numerous culture's andthe've all been negative, but this all started with me with a yeast infection following antibiotic. I am down to my last 5 pills and am85% better. The q-tip test brings no pain, but with sex though Ihave no ripping there is still pulling. No agony the next day. ButI'm scared I'm going to run out before I get it all. LYNN, whatanti-fungal did you take and how? I know someone has already asked this. It's curious that you still recommend surgury when I gatherthat you took an anti-fungal after you had it. Any input from womenhaving success with a straight fungal approach would be appreciated.Thanks.

Name:

Mary

Email:

gallowaycreek@yahoo.com

Date:

5/21/2002

Comment

I just posted but forgot to mention that even though I sworn offever going to another doctor again, I did check out the active-releasetherapy. The guy said it was the sacrospinous ligament, which youcan locate by sitting in a hard chair, find your sit bones or tipof your hip bones and follow a line to the bottom of your sacrum orjust above your tail bone. The pudendal nerve gets snagged theresomewhere. A lady posted a number of excercises awhile back and theyall seemed appropriate. He also did a thing where I layed on my backhe sat by my side, put my knee over his shoulder and pressed the ligamentwith his thumbs. Very painful. Also suggested greeting the sun, as in yogato loosen up abdomen. But doesn't anyone ever ask why we spasm and clench?Cause we just like to? Again I think it's fungus. Diflucan did nothing.

Name:

Kathi

Email:

Date:

5/22/2002

Comment

For Dee,The Emu oil is at www.clovercreekemus.comKathi

Name:

Tara Schenk

Email:

 

Date:

5/22/2002

Comment

I'm 28 and have been dealing with vulvar vestibulitis for almost 2 years now. Like a few of the other people I've seen on this site I had what I thought was a horrible yeast infection before this started. I was also on antibiotics for acne for about 8 years and finally finished it off with Accutane about 6 months(?) before these new problems popped up. I was lucky enough to have an obgyn who was aware of this disease, and when all the cultures and biopsies came back negative and the clobetasol and diflucan did not work she sent me to a specialist. I've been working with Dr. Gibbs at University Physicians in Denver, Colorado. I've had some relief with nortriptyline but haven't changed for a few months. Now he suggested Botox for the treatment of v.v.s. This appears to be a newer treatment because I can't find much information about it when related to v.v.s. Has anyone else tried this? p.s. My fiancee and I discovered that using lidocaine and condoms helps a tremendous amount with the pain, especially the pain after intercourse. Hope that helps some of you!

Name:

Dana

Email:

sdferri@attbi.com

Date:

5/22/2002

Comment

Tara: thanks, your info did help! Have you considered trying topical Estrace cream? It has worked wonders for many of us who frequent this site.

Name:

Email:

Date:

5/22/2002

Comment

Just seeing if this is working right. Doesn't seem like there have been any new entries in quite awhile.

Name:

Kathy

Email:

Date:

5/22/2002

Comment

To Tara: My gyn also suggested Botox for my v.v.s a couple of years ago, so I went to my dermatologist who was also treating me at the same time for varicose veins. He did not think it was such a good idea for the simple reason it was expensive, painful, and would only last about three months and then have to be done again and he could not tell me how the v.v.s. would react to the Botox. My tissue is thin there, and my gyn's thinking was that the Botox might would give me more of a cushion and possibly help with the tearing I was/still am experiencing. I didn't ever try it, but if you do, please post and let us know how it works. Thanks

Name:

Jennifer

Email:

Date:

5/24/2002

Comment

I think that a sociologist has taken interest in the psycho-social aspect of vulva pain is a good thing, I do not understand why you are sooo upset? If she brings on more awareness about the condition, that is good. If she can show more MD's that this is not in our heads, that is good. Her study is very narrow, but that is what will make it a good study--specific and focused. A few years ago when I had contacted NIH they said they had funds put aside for vulvodynia research, but had not received decent study proposals for research. Back then it was not finding the money, but finding the researchers. As much as I can emphasize with everyone just simply wanting to get through the day without pain, sexual loss is horrible for my identity as a woman and as a wife. The study is going to hopefully demonstrate that this is devastating to anyone who has it, I have had MD's say, well you seem to still be able to function...you work, you get out everyday...to hell with them, I did all of these things in agonizing pain, just because I forced myself to do daily tasks does not mean I am o.k. The more information the better.

Name:

Email:

Date:

5/24/2002

Comment

Name:

M.

Email:

medusa_m5@hotmail.com

Date:

5/24/2002

Comment

Hi all - I just wanted to tell you that I had my first of what will be a series of 8 sets of interferon (Intron-A) injections yesterday. 5 million units of interferon was given to me in 6 shots. If you will picture the opening of the vagina (and I'm sooo sure you all can!), I got the injections on the inner labia at "clock points" - 1 and 11, 3 and 9, and 5 and 7 - and yes they HURT! I had the injections at about 4:30pm and was fine until about 7pm. I really thought I was going to get away with no side effects - no such luck. Between 7 and 8pm I got a fever that shot up to 102, and terrible shakes - the shakes stopped after about an hour and for the rest of the evening I had a fever of 101 and stayed burried under a blanket on the couch. The fever broke at 1:30am. Today I feel just fine (a bit rung out, but it's a beautiful day and I'm headed out to do a bit of shopping, so I really don't feel that bad at all). Last night wasn't fun, and I have to do this 7 more times, but it will definately be worth it if I can get better. I will continue to post my progress. M.

Name:

Email:

Date:

5/24/2002

Comment

To M: Just curious about the placement of the interferon shots. I can see why the twelve o'clock would be avoided but why not the six o'clock? Do you know if the placement will vary for the next series? Best of luck.

Name:

Barbara K. Roper

Email:

bkrope@mail.iocngrp.com

Date:

5/24/2002

Comment

I've been diagnosed with Interstitial Cystitis & Vulvodynia. However, the Vulvodynia is not Vestubuitis - it is Essential. I'm having difficulty finding Citracal 950 WITHOUT "D" - any suggestions?

Name:

M.

Email:

Date:

5/25/2002

Comment

Re: 12 o'clock interferon shots . . .The shots will not always be in the same exact sites. She has a large area to cover and this was just the first time. I'll post as the injection sites change.M.

Name:

Gayle

Email:

g5555@aol.com

Date:

5/28/2002

Comment

I must have the most years of experience with vulvodynia as anyone who has written in these journals...for my seiges began 20 years ago at the age of 35! I was diagnosed with interstitial cystitis and treated with painful DMSO treatments and stretching of the urethra by a urologist. From there it has been downhill all the way. My symptoms are the same...(as I write this I am sitting on a pillow on my computer chair because of pressure and I have just tossed aside the ice bag I was using to relieve pain.) My treatment by at least 10-15 GP's and gynecologists has been the same...total disbelief and denial that I could really be suffering with such symptoms. I have always walked away from these office visits with great anger and frustration. Now, as I find myself with a year's leave of absence from teaching and the time to do so, would like to offer my services as a professional writer and endeavor to write a book for all women who suffer with this condition. To hold out for a cure is our ONLY hope, but until we make our voices heard, we will continue to be plagued by inadequate knowledge and resources and physicians who are groping in the dark to find a cure for what is indeed the "plague" of the century for us as women. For months the idea to write a book (I have authored four adult books and 1 children's book--and I have a master's in counseling) has haunted me, but after reading the latest entries of this month, I feel committed, if I am needed, to conduct research and work with knowledgeable professionals AND those who are suffering to present a viable and intelligent case to the American Medical Association and medical researchers and plead with urgency for instant answers. I would be proud to stand tall and speak for all women who suffer in silence...whose marriages have fallen...whose lives have come unglued like Humpty Dumpty...and who have borne this burden with dignity. We cannot wait any longer...this life is not a dress rehearsal, and we need to live it to the fullest and enjoy the gift of each and every day. Surely somewhere there is some combination of practices and medicines that can wipe out this curse. Those in control of this web site and Dr. Glazer, please feel free to contact me at the above address. Anyone else who would like to have some input into this idea, let me know. We are sisters; we are joined in our pain and suffering and I feel so close to each and every one of you. One candle can start the flame that could make a difference in the cure for vulvodynia. God bless you, my new friends. Gayle

Name:

Gayle

Email:

g5555@aol.com

Date:

5/28/2002

Comment

I must have the most years of experience with vulvodynia as anyone who has written in these journals...for my seiges began 20 years ago at the age of 35! I was diagnosed with interstitial cystitis and treated with painful DMSO treatments and stretching of the urethra by a urologist. From there it has been downhill all the way. My symptoms are the same...(as I write this I am sitting on a pillow on my computer chair because of pressure and I have just tossed aside the ice bag I was using to relieve pain.) My treatment by at least 10-15 GP's and gynecologists has been the same...total disbelief and denial that I could really be suffering with such symptoms. I have always walked away from these office visits with great anger and frustration. Now, as I find myself with a year's leave of absence from teaching and the time to do so, would like to offer my services as a professional writer and endeavor to write a book for all women who suffer with this condition. To hold out for a cure is our ONLY hope, but until we make our voices heard, we will continue to be plagued by inadequate knowledge and resources and physicians who are groping in the dark to find a cure for what is indeed the "plague" of the century for us as women. For months the idea to write a book (I have authored four adult books and 1 children's book--and I have a master's in counseling) has haunted me, but after reading the latest entries of this month, I feel committed, if I am needed, to conduct research and work with knowledgeable professionals AND those who are suffering to present a viable and intelligent case to the American Medical Association and medical researchers and plead with urgency for instant answers. I would be proud to stand tall and speak for all women who suffer in silence...whose marriages have fallen...whose lives have come unglued like Humpty Dumpty...and who have borne this burden with dignity. We cannot wait any longer...this life is not a dress rehearsal, and we need to live it to the fullest and enjoy the gift of each and every day. Surely somewhere there is some combination of practices and medicines that can wipe out this curse. Those in control of this web site and Dr. Glazer, please feel free to contact me at the above address. Anyone else who would like to have some input into this idea, let me know. We are sisters; we are joined in our pain and suffering and I feel so close to each and every one of you. One candle can start the flame that could make a difference in the cure for vulvodynia. God bless you, my new friends. Gayle

Name:

Gayle

Email:

g5555@aol.com

Date:

5/28/2002

Comment

I must have the most years of experience with vulvodynia as anyone who has written in these journals...for my seiges began 20 years ago at the age of 35! I was diagnosed with interstitial cystitis and treated with painful DMSO treatments and stretching of the urethra by a urologist. From there it has been downhill all the way. My symptoms are the same...(as I write this I am sitting on a pillow on my computer chair because of pressure and I have just tossed aside the ice bag I was using to relieve pain.) My treatment by at least 10-15 GP's and gynecologists has been the same...total disbelief and denial that I could really be suffering with such symptoms. I have always walked away from these office visits with great anger and frustration. Now, as I find myself with a year's leave of absence from teaching and the time to do so, would like to offer my services as a professional writer and endeavor to write a book for all women who suffer with this condition. To hold out for a cure is our ONLY hope, but until we make our voices heard, we will continue to be plagued by inadequate knowledge and resources and physicians who are groping in the dark to find a cure for what is indeed the "plague" of the century for us as women. For months the idea to write a book (I have authored four adult books and 1 children's book--and I have a master's in counseling) has haunted me, but after reading the latest entries of this month, I feel committed, if I am needed, to conduct research and work with knowledgeable professionals AND those who are suffering to present a viable and intelligent case to the American Medical Association and medical researchers and plead with urgency for instant answers. I would be proud to stand tall and speak for all women who suffer in silence...whose marriages have fallen...whose lives have come unglued like Humpty Dumpty...and who have borne this burden with dignity. We cannot wait any longer...this life is not a dress rehearsal, and we need to live it to the fullest and enjoy the gift of each and every day. Surely somewhere there is some combination of practices and medicines that can wipe out this curse. Those in control of this web site and Dr. Glazer, please feel free to contact me at the above address. Anyone else who would like to have some input into this idea, let me know. We are sisters; we are joined in our pain and suffering and I feel so close to each and every one of you. One candle can start the flame that could make a difference in the cure for vulvodynia. God bless you, my new friends. Gayle

Name:

Gayle

Email:

g5555@aol.com

Date:

5/28/2002

Comment

I must have the most years of experience with vulvodynia as anyone who has written in these journals...for my seiges began 20 years ago at the age of 35! I was diagnosed with interstitial cystitis and treated with painful DMSO treatments and stretching of the urethra by a urologist. From there it has been downhill all the way. My symptoms are the same...(as I write this I am sitting on a pillow on my computer chair because of pressure and I have just tossed aside the ice bag I was using to relieve pain.) My treatment by at least 10-15 GP's and gynecologists has been the same...total disbelief and denial that I could really be suffering with such symptoms. I have always walked away from these office visits with great anger and frustration. Now, as I find myself with a year's leave of absence from teaching and the time to do so, would like to offer my services as a professional writer and endeavor to write a book for all women who suffer with this condition. To hold out for a cure is our ONLY hope, but until we make our voices heard, we will continue to be plagued by inadequate knowledge and resources and physicians who are groping in the dark to find a cure for what is indeed the "plague" of the century for us as women. For months the idea to write a book (I have authored four adult books and 1 children's book--and I have a master's in counseling) has haunted me, but after reading the latest entries of this month, I feel committed, if I am needed, to conduct research and work with knowledgeable professionals AND those who are suffering to present a viable and intelligent case to the American Medical Association and medical researchers and plead with urgency for instant answers. I would be proud to stand tall and speak for all women who suffer in silence...whose marriages have fallen...whose lives have come unglued like Humpty Dumpty...and who have borne this burden with dignity. We cannot wait any longer...this life is not a dress rehearsal, and we need to live it to the fullest and enjoy the gift of each and every day. Surely somewhere there is some combination of practices and medicines that can wipe out this curse. Those in control of this web site and Dr. Glazer, please feel free to contact me at the above address. Anyone else who would like to have some input into this idea, let me know. We are sisters; we are joined in our pain and suffering and I feel so close to each and every one of you. One candle can start the flame that could make a difference in the cure for vulvodynia. God bless you, my new friends. Gayle

Name:

nicky

Email:

cornelis.sgroot@ntlworld.com

Date:

5/28/2002

Comment

hello everyone my name is nicky i live in the uki visited my gyn yesturday, and ive been told that ive got v vestibulitis, i thought i had this condition, now i have been told by a gynocologist, im a little relieved that i know what i have but its scarry too, well ive had this condition the burning stinging feeling for around 10 months now, i started out with a nasty yeast infection that didnt want to go, finally it did go but im left with this horrible burning . its much the same as alot of other women ive read about on here, its so frustrating all of this, ive been told ill have to try lots of differant treatments before im better. so fare ive tried the trimavate cream which i tried around 6 months ago, when i first tried it my god i stung i had to get into a cold bath to get rid of the burning, then i tried estrogen cream , been using it for around 3 months and i have to say the burning is about 50% better, im not completly satisfied, im hoping to be 100% one day, my gyn his now trying amitriptyline an anti depressant, ive only just started with this so ill let u all know how i get on, ive been given some anesthetic gel for after sex , havent tried that yet the only thing with that is the stuff only keeps up for a week after opening, got one month supply so ill let u know how i get on. ive also had bladder probs with this at the start i was having spasms running to the toilet, thats got better over the months with using estrogen. im feeling much improved so im living in hope that one day soon ill be 100% better, hope this infomation can help others dont give up hope...

Name:

Leanne

Email:

lfhstarr@aol.com

Date:

5/28/2002

Comment

Gayle, I tried to email you directly with some suggestions, but it says that g5555@aol.com is not currently excepting email from my address. Please Advise. Thanks.Leanne

Name:

Susanne

Email:

Date:

5/2/2002

Comment

My vulvarpain has always been located at the Bartholons-glands and I did not feel pain unless I touched it. But recently my pain has become more intense I can feel it all the time and i have noticed that the skin on the inner labia is "flozzy" and teared. Has any one experienced the same symptoms and what have you done to make the skin calm and heal. i know it may a stupid question since I can see that there is a lot of the women here who suffers from constant pain and irritation of the skin - but I really don't know where to start. So if anyone can recomend anything I would be very greatfull.