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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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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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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 …

Comments: 10

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 …

Comments: 1


Provoked Vestibulodynia & Pelvic Floor Hypertonicity

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Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  LILY_ on Mon Feb 11, 2013 9:17 pm

Hi Everyone.

I'm 21 and have had provoked vestibulodynia since I was 15, and now I'm 21. I discovered something was up when I was uncomfortable wearing tampons. Over the years, I developed pelvic floor hypertonicity which I believe caused me to have urinary problems (I have trouble at times urinating and getting a constant stream going, even when I really have to go). My urethra also has provoked pain as well, but I went to a urologist who performed a cystoscopy on me, and found nothing physically wrong with it.

My treatments have involved pelvic floor therapy and dilator work, topical gabapentin cream, and a very low dosage of nortriptyline. Sometimes in combination, sometimes alone. I'll admit that I am not the best with sticking with something, as I become very impatient, so I tend to give up maybe a little more easily than I should. The nortriptyline definitely helped my muscles to become more relaxed, but it just made me feel very sluggish and tired during the day, and I could barely wake up some mornings.

I'm getting to the point of my life, as a 22 year old, who wants to have a normal love and sex life. I've never had a real boyfriend before because I don't date. And I'm not quite sure how to. I live in NYC so if anyone would ever want to meet up and get coffee, and talk about all our experiences, I would very much love to do that! Feel free to message me if you have a similar condition to mine as well and if you have had the vestibulectomy surgery. Lately I've really been thinking about heading down that route.

LILY_

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  jen007 on Mon Feb 11, 2013 10:34 pm

Hi LILY_,

I also have PVD. Not fun :[. I've had PVD since I was about 16 or 17...I'm now 20. I had a vesibulectomy in New York this past July. I was sick of trying medications, creams and antibiotics. It was getting to be to overwhelming. I had pretty much tried everything accept for physical therapy. My doctor told me in the end it wouldn't help me long term. My muscles were so tight for so long I don't think physical therapy would've ever worked. I'm thinking about going to pt eventually during my summer break from college. My surgery was pretty much a success, but sex hasn't been all that great. My boyfriend and I are new to the whole thing so it's a work in progress, but at least now it's possible.

Let me know if you have any questions about the surgery, I'd love to give you advice!

-Jen

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  raquelll on Wed Feb 20, 2013 6:06 am

It's good to know that there are other people with the same thing I have that are considering getting/have gotten surgery. I'm just not convinced that this can be solved through physical therapy. Yes, the muscles are tight, but they are tight because SEX FEELS LIKE DAGGERS haha and that causes major stress in all areas of life. I feel like I can't even attempt a relationship until I get this sorted out.
Best of luck, keep us posted!

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  jen007 on Wed Feb 20, 2013 2:01 pm

Hi raquelll,

I had considered physical therapy for a while, since that was my last option other than surgery. After my gyno explained what they do in pt I decided against it. She also advised me that in the long run it wouldn't cure me or anything. So I went through with surgery and it was the best thing I ever did! It was scary, but now I'm pain free and able to have sex, which is a complete God send. I thought for a long time I'd never have a fulfilling relationship or ever have children in the future, but now anything is possible. All the pain is gone, the stress the sadness everything. I wish it didn't have to come to surgery to get this pain to go away, but right now it's pills, injections, therapy or surgery.

-Jen


Last edited by jen007 on Wed Feb 20, 2013 2:02 pm; edited 1 time in total (Reason for editing : spelling error)

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  Tyger on Sat Feb 23, 2013 3:50 am

I also have PVD I believe - is that when it's only provoked ie. only during penetration/sex and only internal?

I have suffered for along time now, around 10 years. I was actually turned away from the best pelvic floor therapist here in Melbourne, AU because he said the skin inside was inflamed or irritated and he couldn't manipulate the muscles properly. So that really makes me thing that for our cases, PT is secondary, if required at all. The "hurts like daggers" part is the first part to solve!

I have tried things like low-dose antidepressants for nerve pain, antifungals etc, to no avail. Pills just ain't working for me. I really think that surgery might be the best option now... but I'm a little scared of it and also not sure if I'm a candidate? Are most PVD sufferers candidates for vestibulectomy's?

Thanks for your experiences, they've helped cement my decision.

Tyger

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  jen007 on Sat Feb 23, 2013 4:14 am

Hi Tyger,

I too have/ had PVD. I say had because since surgery I really don't have issues anymore...just occasionally. And yes, PVD is provoked pain and it can be internal. In my case it was internal and upon insertion it hurt like hell. Like I said I was going to try physical therapy, but my gyno advised me that it wouldn't be the best option for me since Q tips hurt in there...how could I even stand a finger or 2?? Or what ever they decide to put in you...I know I couldn't have put a dilator in there back then. I would say that women who have PVD are the best candidates for surgery. If the pain is localized it's easy for the surgeon to remove. Before deciding to go through with surgery I really did my research. The most important thing to do is find the right doctor/ surgeon. I would say if they haven't done at least 100 surgeries they wouldn't be the best to use. You want someone with a lot of experience. Plus the surgery is very expensive and usually isn't covered by insurance. But don't let the cost keep you from doing it if you choose to. Your happiness and sex life are worth much more than money and you need those to feel normal.

If you need any more information on surgery please feel free to ask!

-Jen

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

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