Vulvodynia & Vestibulitis Helping Each Other A New Vulvodynia and Vestibulitis Support Group

Vulvodynia & Vestibulitis Helping Each Other
A Vulvodynia and Vestibulitis Support Group

Welcome to OUR page ladies!

The Cure?

Hello, my name is Hanna and I have been suffering with Vulvodynia for more than 6 years. Although much better at this time, I know a flare up is possible at any time. I shall post my full story to show my Vulvodynia woes. I have formed a support group here in South Florida and though it has been very interesting and helpful to us all, we all agreed that such a page as this, will be even more helpful. There are many pages for Vulvodynia and Vestibulitis, but none are simplified and quick for just plain talk. SO…………..

This is a page only for communicating and helping each other cope and learn new ways (or old) to make us feel better. Not to cure, because this is only communicating with fellow sufferers. So, please keep that in mind when reading or writing on this page.

Please only give first name, state, country and e-mail address (which will not show on your post). Do not give telephone numbers, or home address, since it is an open page. I shall personally check the posts and if there is any unfortunate or harmful message posted, I must delete it. If you give the state/country you live in we can try to match you to someone in your neighborhood, for a possible support group. Please be informative and ask all the questions you still might have.

If you have a doctor or therapist that you have found that can help you with Vulvodynia/Vestibulitis, please post explaining where this person is and how you found him/her to help you. Other ladies in your area then will have a possibility to share in your good fortune. We shall place it in the Doctor Referral page as soon as possible.

	If you like the page and wish to communicate with other sufferers after your first visit, PLEASE CLICK HERE TO BOOKMARK THIS PAGE, it may not be listed by Google when you are ready to find us again
Vulvodynia

Posts 1 to 10 of 1895

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Jennifer		Canada	2009-07-02 07:52:33
PAIGE - just wanted to reply that yes, I have definitely experienced mostly itching too, especially more recently, and I've read that from other women as well. My naturopath told me that itching can actually be a mild pain signal (same nerves?). It was tough because the specialist immediately thought of HPV, yeast, etc. but those just didn't fit. good luck.

susie	orlando, fl	usa	2009-07-01 10:33:27
Michelle - No I did not think you were insulting myself or Dr Mercer, I just felt bad, that you felt bad. If he could help you, I know he would of, I'm sorry it did'nt go as well as you hoped. I'm glad he spent alot of time with you and hopefully the MRI will tell you something. Please keep in touch and post on the site and let us know what you find out. I just hope and pray that you and all the ladies on this site find some sort of relief. We all know how terrible it can be and we all know that at any given moment a flair can pop right back up. I hope you and all the ladies on this site have a wonderful 4th of July weekend -pain and stress free. God Bless America Susie

Michelle	FL		2009-07-01 07:59:40
Hi Susie, I hope I didn't insult you or your thoughts of Dr. Mercer. I certainly didn't mean to. I was just so hoping that he would say, oh yes, you need PFT & get me fixed right up! Since he is a specialist in OBGYN and like you said, treats Vulvodynia & PNE, I have to believe he knows what he is talking about & wouldn't deliberately mislead me. It's just that my symptoms fit so much into I have read about both those situations, I find it hard to believe I have a hip or back injury. But yes, I will go back to my primary Dr. and do the MRI and see where it leads. Maybe something will be found or something positive will come out of it. I am grateful that Dr. Mercer spent so much time with me & I know he did try to help me. I will keep in touch from time to time.Wishing you all the best!

Hanna	FL	USA	2009-07-01 03:14:15
Hello ladies, you might be interested in the below message from NVA. Some one IS trying to help us, you might read through this and see. Hanna, Magenta sent this to me to let us all know. Thank you Magenta ---------------------------------------------------------------------------------------------------------- From: National Vulvodynia Association Subject: NVA Funds First Treatment Registry To: magentapuss@yahoo.com Date: Tuesday, June 30, 2009, 1:58 PM NVA Funds First Vulvodynia Treatment Registry Thanks to the generosity of a longtime donor, we are pleased to announce that NVA will award Drs. Georgine Lamvu, Denniz Zolnoun and Lori Boardman a grant to develop and implement the first-ever Vulvodynia Treatment Registry. This multi-site Registry, to be launched in fall 2009, will study the efficacy of multiple treatments. The treatments to be studied include, but are not limited to, topical medications (e.g., lidocaine, gabapentin); oral "pain-blocking" medications (e.g., tricyclic antidepressants, anticonvulsants and muscle relaxants); physical therapy; and surgery. Women receiving medical care at the University of North Carolina, University of Central Florida and Florida Hospital will be eligible to participate in the Registry. Upon enrollment, participants will undergo a thorough medical evaluation and tests to assess vestibular skin and pelvic muscle sensitivity. They will also complete several questionnaires on pain, sexual function and quality of life. All tests and questionnaires will be administered multiple times during a two-year period to assess the long-term benefit of treatment. In addition to determining which treatments are effective, we hope that data collected through the Registry will clarify why only some women benefit from a particular treatment and identify factors that can predict treatment success in different subgroups of vulvodynia patients. Additionally, the Registry's findings will help guide the development of controlled treatment trials, which have been lacking in the vulvodynia field. About the Investigators Georgine Lamvu, MD, MPH, associate professor of obstetrics and gynecology at Florida State University, directs the gynecology unit at Florida Hospital in Orlando and supervises the hospital's surgical outcome database. Additionally, she serves as Director of the Florida Hospital Chronic Pelvic Pain Clinic, which provides medical care to 2000 women with chronic pelvic or urogenital pain disorders annually. Dr. Lamvu completed her fellowship in advanced laparoscopy and pelvic pain at the University of North Carolina, where she supervised the chronic pelvic pain database evaluating surgical and medical outcomes in women with chronic pelvic pain. Her research and clinical experience will make her an exceptional Director of the Registry project. Denniz Zolnoun, MD, MPH, assistant professor of obstetrics and gynecology and Director of the Vulvar Pain Clinic at the University of North Carolina, Chapel Hill, provides medical care to many women with vulvodynia. In 2003, she was the recipient of the prestigious BIRCWH Scholarship (Building Interdisciplinary Research Careers in Women's Health). In 2006, she received a five-year grant from the National Institutes of Health to refine diagnostic criteria for vulvar vestibulitis syndrome by studying vulvar skin and pelvic muscle sensitivity. Her research and clinical expertise make her well-qualified to serve as an advisor on muscle and skin measurements, as well as data collection. Lori Boardman, MD, ScM, is a professor of obstetrics and gynecology at the University of Central Florida College of Medicine in Orlando. Her clinical practice is located within the University's Student Health Services, which is used by 9,000 women annually. Dr. Boardman previously served as the Director of the Vulvar and Colposcopy Clinics at Women & Infants Hospital in Providence, Rhode Island. She was also a recipient of the Mentored Investigator Award in Women's Health from the National Institutes of Health. Dr. Boardman will serve as advisor in research methodology and data analysis. Her clinical expertise will also be invaluable to the project.

susie	orlando, fl	usa	2009-06-30 16:21:10
Michelle - I'm glad you went to see Dr Mercer today, I told you that he may diagnose you with something totally different from what other doctor's have told you. He does whatever he can in his power to help everyone. I would go and have the MRI done and see what you find out. I'm sorry if you think he is shuffling you around because he is the type if he can help someone he will stay awake day and night to find a cure and to ease someone's pain. I was told I had Urethral Stenosis and IC from another Dr for five years and had to endure painful dilations every 6 to 8 weeks and was in constant pain, and come to find out from him I had neither. I was in his office atleast a good hour and half and as soon as he examined me he said I had PNE, and Pelvic floor dysfunction and immediately started me on PFT. I could not believe it I told him you are wrong I need a dilation and he said no you do not have what you were diagnosed with give me two therapy sessions and I assure you you will feel better and i did, You may have an injury that is causing the pain. I hope you can view it as progress, Atleast he is giving you another option that your other Dr's have not and if this is the problem hopefully you can be helped immediately. he is well versed in Female Issues and I'm sure if he thought you had vulvodynia, pne or thought PFT would of helped you he would of done whatever immediately. Let me know what you end up finding out and I pray you will feel better. I know it's frustrating, i had to go to three different Dr's before I was diagnosed correctly, just try to remain positive, and see what the MRI states. I hope you can find the positive in his recommendation.

michelle	fl		2009-06-30 13:12:27
Hi Suzy in Orlando: I went to see Dr. Mercer today. I spent 1/2 the day there and I have to tell you, I really do not know what to think! He does not think I have Vulvadynia or Pudendal Nerve Entrapment. I was floored. He examined me and then had me sit for over an hour to get "flared up" and examined me again. Of course he could not "see" a difference. He thinks maybe I have a hip or back injury that is "referring" pain into my Labia. He does not think this is even a female issue. Now all this is contrary to what I have been told so far. So now I don't know what to do. He is referring me back to my primiary physician & wants an MRI done. In the mean time, he thinks I should wean off my nerve blocker meds. He thinks if it was a nerve problem, it would hurt all the time not just when I sit. So he does not think I need pelvic floor therapy. Again, I was floored, as I was prepared for all of that. And I still hurt and have nothing to take for it. Maybe I should see this as progress? I know he is an Advanced OBGYN..I feel like he would know...but I still wonder if I am being shuffled around to another doctor. I know many of you have been thru this....

suzy in MA	MA	USA	2009-06-30 10:18:12
Debi WELCOME.............. I'm SO sorry that you TOO, are part of the "all too familiar" runaround that WE ALL seem to have to endure! Tho I am NOT familiar with LS, I can tell you this much: DO your own RESEARCH! Talk to as MANY ladies as you can for INPUT. Be RELENTLESS!!! with your DOCs. THIS IS !!!NOT!!! a picnic to LIVE WITH!! BADGER them until YOU find someone YOU can trust and that makes YOU feel @ ease. Each one of us has different symptoms, different scenarios, a variety of complicated manifestations of our CPP ( chronic pelvic pain) IT IS their JOB to HELP us and to ease our pain and discomfort........... ~~~~~~~~~~~~~~~~ Don't think that I am DISMISSING your frustration, your anger, your resentment, your sadness... I AM NOT! I feel for you., as we all do. And each one of us continues on a personal road and crusade to better ourselves on a daily basis. Some days SUCK and some days SUCK MORE!!.........But then eventually you WILL find something that will make it SUCK LESS!.....That will make it all worth the battle that you are fighting. My hopes for staying strong and persevering.......and taking things just one day @ a time.................((((Debi)))) hang in there,,,,,,,,,,,,,,suzy in MA

Debi	Pennsylvania	USA	2009-06-29 09:06:53
Hello, I have been recently diagnosed with VV. I started out about 7 months ago with the area being red, raw and tearing during intercourse. After going to doctor to doctor I found one in January who thought I MAY have Lichens Sclerosis but was not sure. Just to be on the safe side she treated me with Clebatasol (mostly used for LS) After 1 or 2 times using it the pain and irriation was almost non-exisitent after intercourse!! I thought I was HEALED! I was also prescribed Lidocaine to use prior to sex. For a few month my husband and I were having normal sex LOL! I went to the doctor in April and saw a different one in the group who diagnosed me with VV and told me to continue with the Clebatasol....????? Ok. Recently I have started to feel a little bit more sore after sex and the area is red. I can feel more tearing during sex too..... I am beyond frustrated at this point and just need advice, positive words, etc.. I am in the Pittsburgh, PA area and go to Magee Women's Hospital. I see the doctors in their Vulva Vaginal Clinic.

paige	tx	usa	2009-06-28 11:38:34
Update! Had vulvular biopsy. Ouch. Results were normal. Dr. did q tip test, normal too. Main symptoms are ITCHING w/ some burning. Sometimes upon waking, much more so with pressure. Vestibule is red red red. This all started w/ wt loss and vaginal infections almost 2 years ago. I feel like I've had every test in the book--STDs, infections (GBS is positive so I'm on preventative antibiotics which has helped and frequent cultures show no yeast from this since the dose is so low and I take probiotics daily). Biopsy for skin conditions. So can VV manifest as mostly ITCHING? And I'm on compounded estrogen since I am tiny and do not ovulate every cycle. Anyone else use estrogen w/ success? Can't tell if it helps or hurts at this pt? Oy. The next step will be some sort of oral medicine to see if I can give the nerves a break. : (

jessica	sc	usa	2009-06-26 18:53:35
Susan, no, elavil should not be hard to come off of. I have come off of it before. Just taper down per your md's orders.

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Posts 1 to 10 of 1895

Paulette	Maryland	USA	2008-08-12 17:07:52
I am a Medical Assistant at the Center for Pelvic Pain in Towson, Maryland. We have been in practice for 5 years at GBMC. We were originally based at the University of Maryland. We having been treating chronic pelvic pain and all chronic GYN disorders for over 12 years. Dr. Richard Marvel is known all over the world for his work with vulvodynia and chronic pain. I want to let every woman know there is help and there is hope for treatment. The pain is not in your head and we do believe you. Dr. Marvel specializes in chronic pelvic pain, interstitial cystitis, vulvodynia, vulvar Vestibulitis, chronic vaginitis, sexual dysfunction and minimally invasive surgery. He is on the board of the International Pelvic Pain Society. He has written many articles for the NVA. Please know that we are here to help you if you need it. Paulette, Maryland

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