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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 …

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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 …

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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.

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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 …

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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 …

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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 …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


Question for you ladies about Symptoms...

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Question for you ladies about Symptoms...

Post  Kathye10 on Mon Apr 01, 2013 4:09 pm

Hi ladies,

I know that everyone's V and VVS is caused from different things, but curious as to what the women with unprovoked feel on a regular basis. Also do you get constant bacterial or yeast infections? I get burning and now itching as if I have a yeast infection (and to my knowledge I don't have one) but it doesn't last all day, it sort of comes and goes on and off. Just trying to compare notes Smile
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Re: Question for you ladies about Symptoms...

Post  Sarah001 on Mon Apr 01, 2013 5:43 pm

I have unprovoked and I have burning in the entire vulvar area so bad I've had to give in and take medication for it and I have constant soreness/rawness in the vestibule too. The meds have reduced the burning alot but it now feels like a prickly feeling if the skin is touched so still altered sensation. I get yeast infections occasionally and never had a bacterial infection in the vagina but went through a phase last year of very regular UTIs which I think were caused by incomplete emptying of the bladder due to pelvic floor tightness. I often feel like the bones beneath the vulvar are bruised too if that makes sense? I had brief itching which mysteriously disappeared and hasn't returned.
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Re: Question for you ladies about Symptoms...

Post  Kathy100 on Thu Apr 04, 2013 11:57 am

I have unprovoked too & my main symptom is a horrible burning & raw feeling in the vulvar which I've got under control by taking notriptyline. Still painful to the touch but nowhere near as bad as it was. I also get prickly, spiking pain around the vulvar / groin area. Also get back pain & tight muscles in legs & buttocks. PT is helping with this, correcting my posture, doing exercises etc.

I haven't had any yeast infections or itching but did have a series of UTIs when it first started as provoked.

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Re: Question for you ladies about Symptoms...

Post  smile22 on Thu Apr 04, 2013 9:10 pm

I feel constant burning. Sometimes i can feel slightly itchy but its almost like a painful itch :S i'm not sure how to explain it really but its not the sort of itch that i get anywhere else! I also get some stabbing pains but the main thing is burning, it feels like an open wound or as if someone has put something corrosive like acid on me. This is all the time, but sometimes it is literally to the point where I feel like I am going to die from the pain, and other times it is just there hurting me all the time. Nothing improves it, and well I was told I had yeast infections about a million times before I got diagnosed with v a few years ago, so i probably do still have them but i am totally against the medication as it never worked and just damaged me further. so yeah, thats me on a daily basis lol.

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Re: Question for you ladies about Symptoms...

Post  Kathye10 on Fri Apr 05, 2013 3:07 am

Kathy100 - So is your V from PFD?

Smile22- Gosh, I'm so sorry to hear how much pain you are in. How did your V start?
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Re: Question for you ladies about Symptoms...

Post  Kathy100 on Fri Apr 05, 2013 11:45 am

None of the doctors I've seen have come out and actually said it's PFD but given my symptoms (and the fact I've had IBS on & off since I was 21) - I think it could be especially as so far the physio is helping & I'm riddled with trigger points! The other thing that they said it could be is pudendal nerve damage but I really hope it isn't that & is just muscular.

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Re: Question for you ladies about Symptoms...

Post  Sarah001 on Fri Apr 05, 2013 12:49 pm

Have to say PFD is not something most doctors know much about, they usually only know about laxness of the pelvic floor. The one doctor I saw who did was a GU doctor and she told me staright away she thought that would be my problem but only because she understodd the various causes of V.
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Re: Question for you ladies about Symptoms...

Post  Kathye10 on Fri Apr 05, 2013 3:11 pm

So with PFD, I'm assuing you noticed symptoms coming on over a long period of time, or was it acute?
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Re: Question for you ladies about Symptoms...

Post  BpCookie on Fri Apr 05, 2013 4:09 pm


wow! You guys have just described my symptoms. I'm not quite sure what you mean by provoked pain. I have constant burning, from when I wake till I go to sleep. Friggin burning bush from Hell!!! I used to have a raw feeling and also that cactus poking feeling too. Those went away and now I'm only left with the burning. I used to get YI constantly but I could never tell if I had one for sure because my vuvla always burned from the LSC and I'm always getting some kind of white discharge that none of the Dr.s have ever figured out. So half of the time that I went in to be checked for a YI it was negative. I also get BI quite a bit but then again, its hard to tell if I have an inf. or if its just the LSC. My Gyno thought that perhaps I was allergic to yeast, so she put me on a 6 month treatment of YI medication. So far I haven't gotten a YI but it has done nothing for the burning.

So thats me wrapped up in a nice hot package.

Hope you girls find an answer soon. Stay cool my friends. hugs
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Re: Question for you ladies about Symptoms...

Post  Sarah001 on Fri Apr 05, 2013 5:41 pm

With me Kathy I had alot of symptoms that indicated a tight pelvic floor for years, ever since my pelvis became unstable in fact. It usually goes unnoticed for a long time with minor symptoms or no symptoms but then something is the final straw and suddenly you start to notice it. I had sacroiliac joint dysfunction which goes hand in hand with PFD and V and I felt like I had to push urine out instead of being able to relax and let it flow and urge would rapidly become urgent so urinary urgency, I'd get constipated no matter how much fibre and water I had because again my PF wouldn't relax and go with the flow, I had provoked only V symptoms for a few years before it became unprovoked, I'd get weird tingling burning sensations that would go off so quickly I didn't bother to look into them and my brains attempts to stabilise my pelvis would have me holding my breath instead of breathing properly and I'd grip with the glutes and pelvic floor all the time and while I was aware of the external gripping I had no idea I was doing it with my PF.
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Re: Question for you ladies about Symptoms...

Post  Kathy100 on Mon Apr 08, 2013 11:16 am

Looking back now, I was like Sarah with different symptoms that started at different times all pointing to a tight pelvic floor. It started with IBS & not being able to relax my muscles to go to the toilet. I also used to "push" my urine out rather than just relaxing it which meant I went to the loo far more often than anyone else I know. Then I had the provoked V symptoms & UTIs after sex on & off for a few years (but Drs said nothing wrong) & then it turned to unprovoked. Now I've researched it, joined this forum, seen pain specialist - I realise how it's all linked. My physio told me that both my stomach & pelvic floor are permanently clenched. I had no idea - learning to relax the muscles now and it's making a difference.

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Re: Question for you ladies about Symptoms...

Post  Kathy100 on Mon Apr 08, 2013 11:18 am

Hugs to you too BP - stay strong xx

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Re: Question for you ladies about Symptoms...

Post  Kate1981 on Mon Apr 08, 2013 9:22 pm

I have provoked V which turned into unprovoked. Started after sex with a new partner and a uti which tested positive for ecoli culture. Initially my symtoms were hot burning in my vulva vestibule and vagina mainly right sided. The burning was so I tense I thought there were flames inside me. The burning started to subside after about 6 weeks with the help of amitriptyline. It has left a rawness stabbing crawling type pain in my vagina. I have problems passing water and I am also constipated. Having a bm always causes burning in my vagina as well as my rectum. I don't really have vulval pain now it's all deep in my vagina on the right side. I am seeing 2 physios who both believe my symtoms are caused by my pudendal nerve which is what I suspected all along. This however could be due to pelvic floor dysfunction as my muscles are tight and I have many external trigger points as well as internal ones. I also have pelvic misalignment. Some days are better than others around my period the pain is always worse and while I am bleeding I have a dragging sensation. I have suffered with IBS from around 15 so I think my pelvic floor has always been tight. My past partners have also all said that I am very tight which I knew myself I always felt like a virgin even after having sex for 16 years. Just hope physio will work or I will have to consider nerve decompression of my pudendal nerve.

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Re: Question for you ladies about Symptoms...

Post  Kathye10 on Mon Apr 08, 2013 10:16 pm

Gosh, I hope your physio can help too! It's just so strange that something like this can come on after 1 sexual experience.
Very frustrating. Sending lots of healing thoughts your way. Smile
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Re: Question for you ladies about Symptoms...

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