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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 …

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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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Not sure...doctors stink!

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Not sure...doctors stink!

Post  907hopeful on Fri Jan 03, 2014 7:56 am

I am not sure what is wrong with me and the 4 nurses and 3 doctors I have seen in the last 4 months haven't been able to help either. Today I saw my clinic's "go to" doc for gyn issues. She said told me they have given me too many different creams to try and I have some kind of irritation because of it. She gave me no suggestions other than to try an allergist, dermatologist or go to a vulvar pain specialist in another state. She said I would learn to manage the things that make me flair up. UGH! Her partner in the practice told me three weeks prior I had vestibulitis and this doc said no way. My pain wasn't in the "right spot". So help me ladies - is there a right spot? Here's my shortened story:
Started out w/ slight itching and irritation from tampon string. Got a culture done, yeast was present so I went through a couple rounds of yeast treatments and Diflucan. Nothing cleared up the slight swelling and pain at the opening of my vagina though. Nurse gave me Nyastin cream w/ a steroid mixed in to try. Had an intensely horrible reaction. Lots of meds later (Steriods, antihistamines, etc.) and the allergic reaction calmed down. Now I am left w/ constant irritation - ranges from slight itching, prickliness to flat out pain right in the opening of my vagina (first inch or so). My pain seems to flair up about a week and a half before my period starts. The intense pain comes and goes but the irritation is always there. My pain is mainly in the lump of tissue on the front of the vaginal wall (right down from where I am guessing the "G" spot is). I do not get knife like pains that I read about associated w/ Vestibulitis. I can have sex some days, but it is irritating and I swell afterward. This whole situation has made my skin hyper sensitive. All soaps, shampoos burn. I have to bend over to wash my hair so it doesn't run down my body! I am only using Vaseline at this point - everything else hurts! I have read so many vv stories lately, but no ones' sounds just like mine. What are your guy's thought - does this sound like Vestibulitis or am I barking up the wrong tree? PS - I was really thinking cyclic vulvovaginitis for a while because if the hormonal flair, but this latest doctor rolled her eyes when I mentioned it.

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Re: Not sure...doctors stink!

Post  mary jane on Fri Jan 03, 2014 9:28 pm

ask your doctors to rule out problems with your vestibular glands. skene's and bartholin's. vulvodynia can present with erythema of vestibular glands. see here: http://www.drrichardreid.info/index.php/pdf/sexual-pain-vulvodynia.pdf

it is def. a skin issue. stop using tampons. buy chlorine-free pads like natracare. if you get along with vaseline and parraffin products it's ok. I personally switched to dr bronner's 100% organic no scent no chemicals baby soap. I don't have a skin problem, but I just don't want any more chemicals there because of my inflammation issue and y.i.

vulvar swelling can mean a lot of things....not sure which is which and why
I used to use voltarol/diclofenac suppositories (rectal) in the past for the inflammation, but I wouldn't recommend this to everyone as each body is different. For me it worked like magic overnight.
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Re: Not sure...doctors stink!

Post  mary jane on Fri Jan 03, 2014 9:30 pm

oh and get your hormones tested
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Thanks

Post  907hopeful on Sat Jan 04, 2014 1:06 am

Thanks for responding! I have switched to all natural olive oil soap w/ no added chemicals or scents. Using all natural hair products too. I switched to nutracare pads and tampons for super heavy flow days. My menst. flow actually makes me feel a bit better - it's somewhat soothing. I started using emu oil last night and that was a littlle soothing too - we'll see how it goes. I also bought some Sea Buckthorn berry oil. Has anyone had luck w/ that? I am just so frustrated not knowing what is going on and how to treat it. It's emotionally difficult to have your lady bits aggravated all the time and no doctor cares enough to help beyond throwing more aggravating drugs at it!! I set an appt w/ a nurse at an alternative/naturopathic clinic. I am hoping she can help. She specializes in bio-identical hormone treatment so hopefully she will do some hormone testing. Last dr (quack) I saw asked if I wanted her to cut out my ovaries when I asked about my issue being hormone related. Real professional! I have had a lot of other hormone related symptoms (cysts, hormonal acne, heart palpitations went away, etc) so I think something is going on there, but I don't know what. I just turned 35 so maybe perimenopause??

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Re: Not sure...doctors stink!

Post  mary jane on Sat Jan 04, 2014 4:27 pm

whatever you do, don't get surgery, especially hysterectomies !!!!!!!!!!!!!!! those are the worst and yes, some docs recommend those for pelvic pain. ridiculous!
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Re: Not sure...doctors stink!

Post  Alana3 on Sat Jan 04, 2014 4:31 pm

I have to disagree first that isnt a hysterectomy its ovary removal. I've had surgeries and they've all bettered me I wouldnt give that advice. Im possibly looking at a hyster at some point and wouldnt think twice. As for that doc they usually dont agree to remove.anything so willingly id find someone else.

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Re: Not sure...doctors stink!

Post  mary jane on Sat Jan 04, 2014 7:14 pm

I read that she was talking about ovary removals, I just wanted to mention an extra possiblity. I know the difference between the 2 surgeries....it is just that the pudendal forum is FILLED with women who have awful nerve pain from hyster. operations. A lot of doctors promise pain resolution with hysterectomies.
My own mom has nerve damage from the hyster, luckily for her it's just numbness and not pain.

doctors think that cutting into you is the solution for everything nowadays!!!
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Re: Not sure...doctors stink!

Post  Alana3 on Sat Jan 04, 2014 9:41 pm

Not everyone has the same problems as you do. My surgery was very successful. In any surgery it could be made worse. I dont know what docs y'all are going to but surgery is a last resort usually.

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Re: Not sure...doctors stink!

Post  Alana3 on Sat Jan 04, 2014 10:51 pm

Oh and I agree with u mary jane too Im just saying not all surgery cases are negative please dont take what I said badly

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Re: Not sure...doctors stink!

Post  alessandria on Sat Jan 04, 2014 11:07 pm

Just wanted to chime in... medical school, residency, and fellowship are extremely rigorous processes, and people who don't know their stuff genuinely do not make it through. Your doctors are not idiots, and have spent years upon years devoting most every waking hour to learning what there is to know about the human body and illness. I mean it -- no weekends, no time off, no sleep, frequently no relationships, for a minimum of 8 years (often 10+), because they must devote that much time in order to have the knowledge necessary to practice. They need to take boards throughout their career to certify that they know everything there is to know about their field of practice, and continuing medical education to ensure they're up to date. What I'm getting at is that doctors are not the problem, regardless of bad experiences you've had. The problem is that no one really knows what causes vulvodynia, and anyone who claims that they do 100% of the time is, unfortunately, lying to you. The scientific/clinical literature has all sorts of data with conflicting conclusions regarding therapies, diagnosis, and causes, and these are all studies authored by vulvodynia experts -- they don't even agree! And yes, some of these studies definitely do support surgery as having a statistically significant benefit over other therapies, even though it should not be a first resort. The problem is that we need a lot more research into causes and therapies, being angry at doctors over this is like being angry at doctors that we can't cure someone with most stage IV cancers either. This is frustrating as all hell to deal with, but the problem is a lack of scientific knowledge rather than bad medicine. Though this sucks, there are numerous studies demonstrating that angry/difficult patients cause doctors to render worse clinical care and feel less invested (as awful as that is... they're humans, not robots, and subject to normal psychological phenomena), so it is important when you're in the office to keep your negativity strictly against the disease and not against the doctor.

It is a good idea to find a doctor who feels comfortable treating vulvodynia, since most aren't. That being said, once you have a doctor who feels comfortable with treating it, you must trust that they probably know more than you do in the context of clinical decisions, and listen to their rationale. If you treat your doctor as being on your team instead of showing up distrustful and acting like you know more than they do (I absolutely do not mean any offense, but unless you are an MD, you really do not know more than they do about medicine), you are more likely to get thorough explanations for your treatment and be able to share data with them they possibly haven't encountered before. I am probably misinterpreting you all and you don't actually think doctors are unknowledgeable, but I thought I'd still give my perspective just in case.

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Re: Not sure...doctors stink!

Post  Alana3 on Sat Jan 04, 2014 11:57 pm

I agree with you hence the reason l get surgeries and not show up with diagrams they already have seen... if you can't trust your team you shouldn't step foot it the office. I'm in the medical field so I understand it. But also some docs dont know how to treat vulvodynia. And that's fine find someone else. I love my doctor. But try not diagnosing yourself as they went to school you didnt. I say it all the time.

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Re: Not sure...doctors stink!

Post  mary jane on Sun Jan 05, 2014 6:35 pm

@ alesandria I do not have "classic" vulvodynia, I have pure nerve pain of the vulva, and I still think all of the doctors I have seen ( Except the ones at UCL hospital London) are absolutely STUPID, don't give me that whole "they studied hard" story, I'm not buying it, I study accounting and not everyone who gets to finish my university will necessarily be a GOOD accountant, same thing applies to any other profession out there. Graduating from univ. means you've worked hard, not that you are worth more than a boiled onion to the entire community.
I have had doctors disagree with me to my face, when my pain is straightforward to treat. NERVE PAIN MEDICATION!
and yet they kept trying to keep me on bloody codeine! I had to ask for my own amitriptyline!
I have seen so many gynaecologists since I was 18, not once did I meet one who was competent at his or her job and I have had minor problems in the past, not like now !!! I have been misdiagnosed with simple things like cysts on my ovaries when they were healthy, been told I must have STDs because of recurring bartholin cysts, etc

Thing is, no one cares about chronic pain. It does not kill you in a physical way, thus is not urgent to treat.
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Reason for my comment...

Post  907hopeful on Sun Jan 05, 2014 10:31 pm

The last dr I went to see has many years of experience and is actually one of the owners of the large women's clinic I was going to. My problem with her stems from her poor bedside manner and the fact that she was not willing to work with me. She rolled her eyes many times when I asked questions about possible causes/treatments. She made me feel like I was over treating my issue and therefore causing my pain. She admitted she does not see many pelvic pain cases and that was why she referred me to go to a pelvic pain specialist in another state. She was just so flippant w/ her answers and not at all caring. I guess I had my expectations set too high. I had waited a long time to see her and was told she was the go-to person for gyn issues in this particular clinic. She was my last hope - now i am back at ground zero trying to find someone to work with me. I am struggling emotionally pretty bad right now. I haven't found a doctor willing to work with me to resolve my issues. It's making me feel a little helpless. She mentioned I could possibly try a dermatologist or allergist (dairy seems to make my pain flair up). Anyone have experience w/ seeing either of these specialists? I am having a "flair" that has been lasting for a couple weeks now. I am really worried this is the new normal Sad

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Re: Not sure...doctors stink!

Post  Alana3 on Sun Jan 05, 2014 10:34 pm

Try going vegan... where do you live?

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Re: Not sure...doctors stink!

Post  907hopeful on Mon Jan 06, 2014 2:50 am

Alaska...it's a couple thousand dollar trip to go out of state to see another dr. I'm desperate enough to schedule the appt now!

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Re: Not sure...doctors stink!

Post  Alana3 on Mon Jan 06, 2014 3:09 am

Oy... um I believe there was.another girl from.alaska here but don't quote me on it. What I did here in florida was googled vulvodynia specialists in my state. I saw a few of them before someone actually helped me but it paid off. Patience as much as it sucks to hear is your best quality. I'd say come to my doc here but that would probably cost entirely too much Sad

In the meantime keep track of what bothers you. Food wise I mean. If it causes a flair stay the hell away. Red wine and certain beers do this to me. And sometimes caffeine esp starbucks if I drink it late in the day. Not fun.

Pleaseeeeee have patience it sucks so bad I know but you can feel better and you dont have to live like this! And if you ever need someone to talk to I'm here Smile but try looking at specialists rather than a regular gyn Smile

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Thanks...

Post  907hopeful on Mon Jan 06, 2014 6:05 am

Thanks for the reminder to be patient...I needed that today. Just so frustrated that I don't have a good dr to work with. I have two appts coming up this month. One with a naturopath and one with another md who says she has experience with vulvodynia. I am going to start researching dr's outside my state. I am leaning towards my issue being skin related, so I think I will make an appt w/ the dermatologist my last dr recommended. I am sure it will take me a month plus to get in to see her. I will need some of that patience you were telling me about!!

I am trying to stay calm and not let myself stress out too much - it's very difficult though!! I have PMS right now which adds to the emotional train wreck going on!

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Re: Not sure...doctors stink!

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