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» New and need some help
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» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
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» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

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Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4


VULVODYNIA DOCTOR OR SPECIALIST

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VULVODYNIA DOCTOR OR SPECIALIST

Post  doctormcq on Fri Jun 17, 2011 4:33 pm

I am writing because I am the Managing Director of the Pelvic Pain Regional Specialty Center in Louisville, KY -- one of only a handful of health care facilities in the entire country that focuses exclusively on the evaluation and treatment of women with Chronic Pelvic Pain and the conditions that cause it. We offer the latest approaches to treating Vulvodynia available ANYWHERE. We have seen many, many women with Vulvodynia from all over the country and are pleased to report that the vast majority are experiencing significant resolution of their symptoms under our care. We continue to hear "I just wish I had found you sooner!". One of the latest treatment options we offer are Botox injections.

To learn a little more about who we are and what we do, I encourage you to check out our website at www.PelvicPain.net. We would be delighted to see any woman suffering from Vulvodynia and to help her get on the path to feeling better!


Last edited by doctormcq on Mon Aug 01, 2011 5:52 pm; edited 1 time in total

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Re: VULVODYNIA DOCTOR OR SPECIALIST

Post  jules on Sat Jun 18, 2011 3:25 am

I sooooo hate advertisements on private webpages for women in pain! Don't take advantage of us!

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Re: VULVODYNIA DOCTOR OR SPECIALIST

Post  doctormcq on Sat Jun 18, 2011 3:23 pm

I am surprised by your response and so very sorry if you feel that I was attempting to "take advantage" of anyone...The staff here have dedicated our professional lives to helping women who are hurting and the last thing we want to do is add to the emotional pain of women with Vulvodynia. Day in and day out, we see women who have gone from doctor to doctor seeking help only to be misdiagnosed, brushed off non-sympathetically, and/or not treated effectively. They (and their partners and families) are left, in a sense, abandoned -- feeling alone and like there's no way they'll ever feel "normal" again. This is horrifying to us and we applaud this website for offering support. Our patients often tell us that we need to work harder to let other women know that we're here. To that end, we were thinking it's important to let those with Vulvodynia (and those who love them) know that state-of-the-art, compassionate, and sensitive treatment for Vulvodynia IS available!! There are new treatment options that actually work! And there is a caring specialist and staff that would be happy to see them and is seeing great results! To me, that's not advertising; that's communicating an important and valuable message.

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Vulvodynia doctor or specialist

Post  ria on Sat Jun 18, 2011 5:13 pm

Hi Doctormcq,

It would be very informative for you to share your experiences and diagnosis with the Ladies here on this forum. As you state you are a specialist on this subject, I am sure you will want to help us Ladies with your vast experience and perhaps give some advice as to how you work in your clinic. I live in the UK so feel we would all benifit from your advice.

We Ladies on here share our own personnel journeys within the medical field so its great to have you on board.

I know you would like to help us so I look forward to your advice and help for all of us.

Many thanks for your time

Ria

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Re: VULVODYNIA DOCTOR OR SPECIALIST

Post  doctormcq on Sat Jun 18, 2011 5:57 pm

Hello...This is Dr. McQuady, Founding Medical Director of the Pelvic Pain Regional Specialty Center, PLLC in Louisville, KY. Ria - In answer to your question, I'd be glad to share some information. First, I believe it's important for any woman who thinks she might have Vulvodynia to see a physician who is extremely experienced in diagnosing and treating the condition as most are not. Effective treatment of Vulvodynia is complex and must be tailored to the specific patient. What follows is how I approach my patients who come to me with vulvar pain:

* The condition is diagnosed through a "Q-tip Test", in which we identify and map areas of sensitivity. We also spend about an hour with every new patient, since it is important to really listen and develop an understanding of what the patient has been experiencing. Her answers reveal important clues that will lead to effective treatment.

* Patients generally are treated with some combination of medications - such as tricyclic antidepressants (used for their ability to effectively manage neuropathic pain, not because depression is a cause of Vulvodynia); lyrica; gabapentin; and topical preparations (which we frequently have compounded to address the specific needs of each patient). Often, physical therapy is an important adjunct -- both for the pelvic floor and to specifically treat the condition utilizing specialized techniques. We also are finding that Botox injections can be effective for some women. Finally, surgery (vestibulectomy) is another option.

Interestingly, my patients quite often are surprised to learn that Vulvodynia is not the sole cause of their discomfort. Rather, Vulvodynia frequently is only one component of the complex Chronic Pelvic Pain Syndrome with conditions like pelvic floor dysfunction, irritable bowel syndrome, interstitial cystitis, and/or endometriosis also playing an important role. Research clearly indicates that in order for a woman's symptoms to be successfully alleviated, all causes of pain must be approached in a coordinated and integrated manner. This is one of the reasons that some women come to me still experiencing pain when their Vulvodynia has been treated; simply, there are other underyling conditions that must be diagnosed and treated simultaneously. To learn more about Pelvic Pain (the various conditions that cause it and how we approach it), I recommend that women go to our website at www.PelvicPainKentucky.com.

Finally, I want women to know that there is hope. I see so many (and their loved ones) who are very frustrated and exasperated. They know they are hurting and they don't know where to turn. Even though it can be difficult to land in the hands of an experienced specialist, there are some out there who are compassionate and can help you. Don't give up and don't believe for a second that it's "all in your head"!

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Re: VULVODYNIA DOCTOR OR SPECIALIST

Post  Mouse on Sun Jun 19, 2011 6:51 am

First of all thank you for your post. Most of us have been treated like crazy fools and none of us believe it's in our heads. Our disorder often highlights a huge hole in our specialists knowledge. Maybe they skipped that lecture or fell asleep during it.

My own vulvodynia triggered after bilateral bartholins abscess surgery - my gynaecologist said she had performed much larger surgeries without this result and then refused to see me again. I'm really pleased that you have been able to help women with such an awful life altering condition. We are spread around the world so I'm unsure logistically how many of us could visit your clinic. There are a lot of women in a lot of pain on this forum. It is a common theme though that pain clinics have a lot to offer.

Can you tell me if you consider vulvodynia to be a diagnosis? Pain in your vulva seems to be as logical as pain in your leg ie more a description than a diagnosis.

What we would like the most is more widespread knowledge, could you help with that? Printing information from the internet for your health professional to read and then to be charged for the lesson is hardly great service!


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Vulvodynia doctor or specialist

Post  ria on Sun Jun 19, 2011 10:48 am


You probably feel you are helping us by giving the information sent. Please first and foremost we are the experts on our bodies and we have read realms and realms of information, this is not what I want, I cannot speak for the other ladies.

I would like to hear other treatments that have worked in your professional capacity not a carrot dangled on the end of a stick approach. All the experts I have seeked ( after I had a thorough examination, blood test, biopsys..... to rule out any other conditions) come back to Medication, I had to find Howard Glazer myself with regard to the Biofeedback, and when I mentioned his name and the Biofeedback treatment I was told here in the UK they did not rate it and said they didnt have good results with it. And I am talking about specialists in this field.

Well I do the Biofeedback everyday 20mins AM/PM and it has helped me a great deal, when you mention this to the professionals they think your nuts and look at there notes and ask about medication how are you on it? I would like to hear from someone who can tell us Ladies more not the usual jargon we can read on the web or as part of a vulva associationwe may have joined.


We live with this and we use everything we can to get well. We need someone to think outside the box and do lots of
research or if they deal with this day to day they must have more information they could share.


Ria



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Re: VULVODYNIA DOCTOR OR SPECIALIST

Post  Aussie on Thu Jun 23, 2011 1:49 am


doctormcq ,

I agree with the other ladies here. Although we thank you for trying to offer help, many of us are not in your area so would be unable to attend your clinic. The information you have listed about diagnosis and treatment (qtip test, antidepressants, lyrica etc...) we already know. Most if not all are already doing all of the things you listed, with the utmost respect this is very old information to us.

Perhaps if you want to help you could share treatment options that actually work, and that you have had proven success with. What would be interesting is statistics of success rates with each individual treatment you have available. We can't access your clinic and are desperately in need of something we have not tried.

Regards,

Claire

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Re: VULVODYNIA DOCTOR OR SPECIALIST

Post  Joolibee on Thu Jun 23, 2011 10:02 pm

doctormcq,

First of all I thank you for your efforts to share information with us. As has been mentioned, we are a geographically diverse group and most of us would not have the opportunity to attend your clinic. What I have found frustrating is the apparent lack of international communication between professionals who specialise in this area; thus, e.g. treatments available in USA may receive little or no support in other parts of the world. I would like to see evidence of greater international communication in the medical profession. Also, if you have treated patients successfully, perhaps you could encourage some of them to share their experiences with us via this forum. I can only speak for myself, but I always feel very encouraged to hear other people's success stories.

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Re: VULVODYNIA DOCTOR OR SPECIALIST

Post  jules on Fri Jun 24, 2011 3:33 am

Geez, I was quite drunk and in horrible pain when i responded to this post..i sounds sound angry. that night, i broke down and sobbed. I have never cried so hard. the pain was so bad and of course, drinking brings out the anger/sadness. I guess i was angry. i was angry that someone else logged on to tell us how great their clinic or practice is... I was diagnosed by a specialist at the world renowned Mayo Clinic in MN. That doctor who diagnosed me had no idea how to treat my pain. Yesterday, I counted, i have been to 9 different doctors for this disorder. No wonder i am angry. I have tried it all. I do have hope or i would not keep on trying. But, you're right Ria, we know about the drugs used for the treatment of this disorder. I have tried all, but one (Ami) and i am holding off because of the bad side effects. I'm on three meds for this plus pain meds (Percocet). i do P.T and acupuncture. I have had 4 nerve blocks w/ no relief and i am looking at having a neurotransmitter placed in my body. i know there is Botox, but it typically doesn't work for generalized V. what more is there? if this doc logs back on because he/she truly would like to help women w/ V. I would love to hear other treatment options there are that we aren't aware of. we know how one is diagnosed. we know about all methods of treatment because we talk to each other and we do our own research. Please, please let us know what is the latest? We definitely welcome your knowledge, Doctor.

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RE:vulvodynia doctor or specialist.

Post  ria on Fri Jun 24, 2011 12:59 pm



Hi Ladies,

I have read your posts and Jules my heart has gone out to you. There is not a woman on this forum who has not experienced what you described the pain, the anger and the dark tunnel, we think we are never going to get through it all. Well my take for what its worth is no one has the answers, we can take advice and try the Medication and all the other therapies. All we women on here are experts in Vulvodynia, and yes the Doctor came on and told us about his Clinic and the work he does for women.

It would be great to here what methods he uses other than P T, Biofeedback, Medication, breathing exercises,balancing hormones,
and Ladies you are now nodding your heads and all the other treatments recommended. Well Like Jules I have seen them all paid private and you know the rest......at the moment I am at the vulva clinic NHS, because they are offering me the same as the experts, kill the nerve pain with Meds, and hopefully P T when I see him. When I saw Howard Glazer it was £100.00 each telemedicine consultation, when you get this condition you need money to pay for answers.

We have David Wise Ph.D Rodney anderson, M.D. (A headache in the Pelvis)
Elizabeth Lee Vliet, M.D.(Screaming to be heard)
Amy Sein, M.P.T. (heal pelvic pain) and lots lots more.........

We have do what we can, each and every one of us, we are all different, I take the Gabapentin and a holistic approach. The Gabapentin seems to be the best for me at the moment tried Ami, Nortriptyline, Effexor . You know what Ladies this forum does a fantastic job, think back to when your problems started, it would have helped me to have all this valuavle information. Yes I looked on the web for anything to help, but women living day to day with this and sharing experiences is invaluable. And the fact that we are from all over the world sharing our treatments and what we do to ease the pain.

Keep doing what we are doing and you know we will get rid of this bloody awful condition.


Sorry for the rant just feeling p***ed off.


Sorry guys Ria

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Re: VULVODYNIA DOCTOR OR SPECIALIST

Post  jules on Fri Jun 24, 2011 11:44 pm

Thanks Ria! I know you all have "been there, done that." Good point.. there is not one treatment that will work for all and the medical community does not know how to treat this disorder. When we find a med. that helps, it only helps for awhile. My ultimate goal is to sit on a chair like a "normal" person w/out a foam cushion.. I do have hope or i would have "offed" myself long ago...LOL (probably true). I did have a period of time where i had some relief. I hold on to hope that i can go back to that point. I'm thankful for pain meds. and I'm thankful that i have all of you to gain support and understanding from. I am sure that doctor will not come on again to give us free advice (ha ha!). I love everyone's responses. This disorder is expensive. I have spent TONS of money on it. Geez, i could have bought something really nice w/ all the money i have thrown at this disorder. I don't like to be negative. It's good to get it out...but, we gotta move forward and be hopeful. There are new meds/treatments ahead of us. They are in the making. Or....maybe this will just disappear someday. yeah, i know i'm really reaching now. Thank God for alcohol...lol (none tonight..so far). Ladies, hope you are all doing well! It's so fun to have friends across the world. I love technology.

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Re: VULVODYNIA DOCTOR OR SPECIALIST

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