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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.htm Thanks 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/gyn Cornell U. Medical College/NY Presbyterian Hospital owner, 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 was first told to use Aldara, but I refused hearing that it was dreadful to the skin, with intense burning. But I don't feel that 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 petition service, at:

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

I personally agree with what this petition says, and I think you might agree, too. If you can spare a moment, please take a look, and consider signing 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) 367-3110 Boston, 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 have read that this is now being used, I was wondering if it is helping suffers of this syndrome. I would appreciate any insights into this treatment.

Thanks.

Name:

Jo Davies

Email:

joannekdavies@yahoo.com

Date:

2/3/2002

Comment

Support group Hi 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 have made progress. Haven't seen a post from you in months. The suggests you provided me from Dr. Fowler have helped me and I was wondering if you were still seeing him and following his treatment regime?

If you are still a reader, please respond. I hope you are feeling 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 and he 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 my hair 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 even more 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 moisturizer and 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, my burning tongue has improved. The Vulvodynia still flares especially if under stress but I have had some good weeks. Dr Yiannias did several blood tests but they all came back negative (including herpes). He has recommended 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 appreciate all the info you posted. I have been to 2 stores this morning in search of the products you listed. I will check Ulta this afternoon and see if I can purchase some of them. I will begin 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, sounded like 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 the cause of the problem, irritants.

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

Thanks once again, and I am happy that you are finding solutions 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 zealand and no one will help me because its very rare here not even the hospital. PLEASE HELP ME ANY ONE OUT THEIR PLEASE EMAIL ME BECAUSE IM ALONE. AND IM GETTING SO ILL WITH THE PAIN IM ON OXYGIN EVERY 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 how did your appt with Dr. Davis go? I hope well. Laurel how are you feeling? When I read the guestbook and don't see your updates, the guestbook seems to lack the personal touch that it once had. Hope you are doing well and best 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, Jeanne jeanne_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 burn my skin when applied.

Has anyone used a cortisone cream that does not burn your skin, 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 at understanding the problems behind our inflammation. Both are excellent. Dr. Gregory Gorman 581 Boylston St. suite 805 Boston, MA 02116 617.421.1881.

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

Donna I 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 that burn. 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 soon Mrs. 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 of course 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 least 8 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 using estrace 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 back so I began using it again. Lorazepam is wonderful for immediate results. It does make you sleepy, but my doctor feels 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

Thanks Howard 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 never heard of it before. Is it performed by a chiroprator? Have any of you achieved any success with it. I am currently seeing a chiropractor for VVS and was wondering if perhaps he could use this therapy with me. Any information would be greatly appreciated. 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 never heard of it before. Is it performed by a chiroprator? Have any of you achieved any success with it. I am currently seeing a chiropractor for VVS and was wondering if perhaps he could use this therapy with me. Any information would be greatly appreciated. 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