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» It feels like I’m going to have pain forever
Yesterday at 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Yesterday at 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Yesterday at 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 9

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 0

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 5

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0


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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