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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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

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: 5

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

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


i wonder what pain free sex feels like.

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i wonder what pain free sex feels like.

Post  rayster on Mon Oct 03, 2011 4:43 pm

Hey
I thought I'd share my story here. I've just joined this website after a little while of feeling down in the dumps about my shitty vagina for the past little while.

A little bit about me: I'm 22 years old, and was diagnosed with vulvodynia (provoked vestibulodynia, vulvar vestibulitis... the darn thing keeps changing names) at age 17, shortly after I first started having sex (and wondering why it was so painful). I literally woke up one day with a nasty yeast infection which I got treated right away (and it went away pretty soon thereafter) however the pain associated with it decided to set up camp and stay long term. I was devastated at first cause my mind immediately jumped to thoughts of things like 'im never going to get married and have kids'. Treatment wise I tried a few things.... I took pregabalin for a while but I hated it and didn't notice any significant improvements, so I stopped that and have been pretty happy not taking it. My GP originally prescribed me a ketamine+amitriptyline mixture in an aqueous base which I used to put on but that didn't take much of the edge off the pain either. Eventually I discovered lidocaine, and it was amazing because it meant I could have sex with the least pain I've ever felt (all be it the lame part of getting into the swing of things and then saying to the boy 'um.... hooooold on I'll brb!' a bit of a mood killer, but I am most definitely not complaining.

Things psychologically only started getting better for me once I had just accepted that this was me, and I would just have to cope with the pain instead of wishing it away and feeling sorry for myself. I've gotten by pretty well with this mentality, and I've met a wonderful boy who is extremely supportive. After my first boyfriend experience I was convinced that every guy I ever met would want sex twice daily from me and If I couldn't put out then that was my own fault - pretty crappy feeling. I have now since been reassured that not every member of the male gender is this way. Smile I've always thought that being a lesbian or becoming a nun would be a pretty good solution to my problems... but alas, not for me. I feel very lucky to have met such a supportive boy, so I don't have to join a convent just yet... hehe.

I know that for me, my pain is related to yeast, after all that's what started the ball rolling in the first place. I feel as if I am constantly riddled with itchy red irritation etc - probably once a month or so. I hate the cannesten cream, cause it burns and makes things worse. Its the most frustrating thing in the world. My pain also flares up and down with my stress levels, fun times.

Recently (and why I'm feeling so down in the dumps and scared out of my mind after being relatively okay for so long) I saw a gyne dr who said that I had a subclinical HPV infection (my heart sank when he told me this - I've only ever had sex with 2 guys, and I don't even like sex for that matter, so why do I deserve this?!), and that this could be a cause for my pain. He offered for me to have the area lasered off. I had a long think about it, and the doctor and I had a discussion about it and we eventually came to the agreement that neither of us were convinced that the hpv was fully to blame for my pain, but why not give it a shot at removing it.

I went through with this, and its been a month since I had the procedure. I am now scared out of my mind - I feel like I am 17 again and I don't know what my future holds. I've been coping so well and now all of a sudden my pain has skyrocketed to a point that I just can't handle, and I don't see an end in sight (the same thoughts I had when I was first diagnosed). I feel really frustrated and scared.

I had a theory in the back of my head that the laser could potentially piss of my nerve endings and anger them... and I think that's what's happened, I just don't know when (or IF for that matter...!) the pain will settle down. I hate not knowing, and I hate feeling like a shitty excuse for a woman because I can't have sex. The pain is so bad right now I nearly passed out putting in a tampon, so... sex is on hold indefinitely. What do I do?!? At least before I could have sex.


I found this website with the hopes that maybe venting a little bit to other women who understand what I'm talking about might make me feel a bit better and lift up my mood a bit. Smile Would be so nice if this was the kinda thing that wasn't so taboo to talk about, seeing as at least recently, its been occupying my thoughts more than its fair share.

I feel silly sometimes going to talk to my GP about not being able to have sex, because sometimes I feel as if its such a comparatively trivial problem - there are far worse things in the world, and some people are riddled with far worse health problems (cancer, neurodegenerative diseases, nasty things like that). I wonder if I'll be taken seriously. I'm also worried whenever I speak to a new doctor that they won't know or heard of what I'm talking about. A couple times in the past my GP appointment has been taken up with me educating them on the topic of vulvodynia and then me leaving being told 'theres no magic cure you know!' (yes thanks, I realise this). Sigh. I don't know what point I'm trying to make here.

Anyways... that's my story! rant over...
-rayster
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Re: i wonder what pain free sex feels like.

Post  Sarah001 on Mon Oct 03, 2011 6:50 pm

Hi Rayster and welcome. It's such a shame you had the laser treatment before joining us here as I'd have done alot of trying to persuade you not to, in recent research it's been found to be unhelpful at best, worsening the symptoms at worse but don't think that means you're stuck with the problem. Frst piece of advice is stop using thrush creams! If you get thrush take the oral tablet as the creams irritate things further. Second piece of advice get yourself off to a women's health physio and get them to check your pelvic floor for tightness, I'm willing to bet there's a PF problem after having to have painful sex twice a day when you didn't really want to! Third piece of advice stay calm and practice breathing into your abdomen rather than chest breathing, it helps the pelvic floor. Fourth piece of advice try applying the lidocaine at night before you go to sleep if you don't already, some women improve drastically doing this and at the moment it should help calm down your extra pain. Keep us posted and please get your PF checked!
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Re: i wonder what pain free sex feels like.

Post  rayster on Tue Oct 04, 2011 3:15 pm

Thank you very much for your suggestions - much appreciated!! I will definitely try putting the lidocaine on daily at night, as this isn't something I've been doing. I'm encouraged to hear that it has helped some women improve drastically... Also, i'm curious - what kind of symptoms does PF tightness cause?

I'm just very discouraged (and massively upset) about this extra pain. I feel like there's some scar tissue there and now the skin around the vulva is less stretchy, so now when it is being stretched it hurts a lot more. I kinda knew in the back of my head that the laser would be a (very) bad idea, but I took the risk... arggggg.

It's only been 5 weeks since the procedure, so maybe I just need to be extra patient with healing time. I hope it gets better, and if it does, then sooner rather than later would be nice! I'm not a huge fan of sex, never really have been so it makes it extra difficult for me and my boyfriend cause I don't really like doing any of the other stuff Embarassed , have never really felt all that comfortable with it.

Anyways, thanks again for your suggestions. I'm really glad I found this forum. Very Happy
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Re: i wonder what pain free sex feels like.

Post  Sarah001 on Tue Oct 04, 2011 6:39 pm

PF spasm can cause urinary urgency and frequency, back pain, constipation, piles and fissures, inflamed skin in the vulva, feeling like you have a UTI when you test negative for it, hip pain, a feeling of heaviness and fatigue, painful penetration during sex, a tight vaginal opening... the list just goes on. After your laser surgery if you feel tight it might be an idea to try dilators and gradually work up to the larger one, I really do think there's going to be some PF spasm though.
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Re: i wonder what pain free sex feels like.

Post  SimplyBelle on Sat Nov 05, 2011 4:31 am

... but what about the anxiety?

Even, if I think about pain-free sex, or if my body was in that position to have pain-free sex, the months of painful sex, painful paps, painful examinations, etcetra, heightens my anxiety about doing anything down there...

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Re: i wonder what pain free sex feels like.

Post  Sarah001 on Sat Nov 05, 2011 12:42 pm

Yes anxiety about pain can also affect the PF muscles and make them tense up more in anticipation of pain which is why doctors recommend avoiding sex if it hurts.
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Hi there

Post  Aussie on Mon Nov 07, 2011 6:42 am

I thought my issue was yeast also. I was always red raw and irritated after my inital outbreak after my honeymoon. I tried yeast meds oral for 6 months and no change. I tried ami and lyrica each for months, countless creams lotions and potions and I am now happy to say I am feeling much better thanks to herbs and physio. Please read my post on herbs. It may just do the trick. Lidocane burned me too. Oh and stay away from yeast creams. If you must use the oral. A lady that treated me with physio acutally suffered v for 7 years. Hers was related to PF tension and a constant yeast infection. She treated the yeast with long term anti fungals for 6 months - thus I tried the same approach. It worked forh er, not for me. Just goes to show doesnt it how differnt we all are and so many issues within the body can produce the same symptoms.

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Re: i wonder what pain free sex feels like.

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