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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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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.

jules

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