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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 …

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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 …

Comments: 6

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 …

Comments: 3

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). …

Comments: 0

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 …

Comments: 22


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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