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» Can you guys tell me your experiences with diflucan/Fluconazole?
Today at 1:29 am by ryn207

» So frustrating!!
Today at 1:25 am by ryn207

» Looking for suggestions or encouragement
Today at 1:19 am by ryn207

» Looking for a friend..... and new problems
Yesterday at 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

Comments: 5

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

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: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

'When Sex Hurts' A book that will literally change your life, using Instillagel and beware of the contraceptive pill!!

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Re: 'When Sex Hurts' A book that will literally change your life, using Instillagel and beware of the contraceptive pill!!

Post  Sapphire21 on Sun Apr 22, 2012 10:34 am

Yeah I am just really scared it is going to mess my body up even more. Every doctor apart from the one who prescribed me the gel said they would be wary using it. They seem concerned that it might cause irreversible masculine changes to my body, even though I would only be using a small dose. You used to be able to get testosterone for women over here so surely it is the same thing? But I don't know, I guess they know more about it than me. Maybe that's why you can't get it here anymore.

My new consultant is a psycho-sexual counsillor and she asked me how I would feel if I can't get fixed which really scared me. But I'm hoping that this won't be the case. She said I should let go of the free testosterone thing and she pointed out that the book just mentions the women who have low free testosterone, went on the pill and have sexual pain - it doesn't mention any studies of women who may have low free testosterone but no pain. But I don't know, I don't really know what to think.

The best of luck to you with the cream.


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Re: 'When Sex Hurts' A book that will literally change your life, using Instillagel and beware of the contraceptive pill!!

Post  Gizzy on Mon Oct 01, 2012 4:09 pm

Funny enough i decided to stop using the pill because i started taken the pill just before me and my new bf got together and i've been sick since that?Maybe the pill didn't help matters? Sad

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Re: 'When Sex Hurts' A book that will literally change your life, using Instillagel and beware of the contraceptive pill!!

Post  A2015 on Fri Aug 14, 2015 10:20 am

I wanted to post about my story to reiterate that there are DEFINITELY cases where VVS is caused by hormonal contraceptives, even when not immediately obvious.
I want to desperately encourage anyone who has VVS to come off hormonal contraceptives if possible.

In 2012, I had unprotected sex and took the morning after pill. I developed vestibule redness/soreness/itchiness. The clinic confirmed a Yeast & BV infection, explaining that this was common after sex (though I had never had any vaginal problems for years before). They also put me on the Pill (Microgynon 30). The infections cleared (tested negative) but my symptoms remained constant.

My symptoms extended beyond vestibule pain. I also had itchiness, redness & subtle inflammation of the whole vestibule (localised to this area), my vestibule skin started to tear during sex, get more inflammed & very regularly develop new infections (Yeast/Bacterial). I also had a lot of discomfort/itchiness in & around my anus.

Firstly, this made me question whether I had VVS because I didn't just have pain of the vestibule, as I kept getting infections too (now I understand that women with VVS are often simply more prone to infections & discomfort of the whole area).
Secondly, I assumed my VVS must have been caused by the infections (proliferation of nerves in the vestibule after infection), because the symptoms I had felt like they were permanent, that the skin itself was not normal anymore & seemed irreparable.

I didn't come off the Pill until mid 2013, when I had read more info about a link. I felt I should just come off it in case it might have been making anything worse.

The reality was (by my complete surprise and total elation) that within a month, my vestibule returned to completely normal and ALL other related symptoms also disappeared — the anal discomfort/itchiness & bring prone to developing infections.

I hadn't thought the Pill could be causing my VVS, because I had developed the infections before I started the Pill (I didn't consider at the time that just before I got the infections, I had taken the morning after pill which is a huge dose of progesterone). I also had no understanding of hormones & no idea how they could cause pain in a specific area of the body like this! Every doctor I asked said there was no way the Pill was relevant, which made me have little hope.

I believe there are 2 main causes for VVS — hormonal or a response to an infection. But there can be an overlap, and I didn't consider the Pill could be the cause because I kept getting the infections. But I was mistaken (and so were over 10 doctors & specialists).

I really hope this can help any women suffering.

As a side point, unfortunately, after being perfectly normal for 18 months, this year I developed infections (no hormones involved) and VVS has fully returned. I feel that my body has learned how it responded to infections when I was on the Pill, and now the nerves are irritated again = VVS Sad



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Obsessive Compulsive Disorder - OCD - and Vulvodynia

Post  Sapphire21 on Sat Aug 15, 2015 9:26 am

Hi there,

I am so sorry to hear that you have suffered and that your symptoms are flaring up again.

I actually found out that my Vulvodynia was, if not caused, at least exasperated by my OCD. My OCD may even have caused it. My OCD makes me obsess about things, and sometimes it can make me obsess about things without me even realising it.

So, I do not know if the pill initially caused the problem, and then my OCD made it very hard to cure, or whether my OCD caused it entirely. What I do know is, that when I spoke to a psycho-sexual counsellor, she taught me ways to overcome my problem, purely by using my mind. I am now one hundred per cent able to have fully pain free and enjoyable sex so I know that, for me, this was the answer.

I know that there are a lot of women out there who this will not help, but there may be some who could benefit from this post, which is why I have decided to share.

One thing I do not know about this book that I posted about is how reliable a study it was. I was very, very emotional when I had this problem and I really believed that it was a good study with good evidence. Unfortunately, I no longer have the book and so cannot look back at it with more objective eyes. It may be a good study, it may not - I do not know.

I do know that I have had the hormonal coil for a year now and have absolutely no problem with it. I am, however, not sure of the hormonal difference between the two contraceptions.

I wish you the best of luck in finding a cure. In my personal experience, being convinced that the problem was related to one thing didn't actually help me cure it in the end - but I do appreciate that some people make a correct diagnosis of themselves. I think it is really important to talk to your doctor about your theories, and make them test you for everything you think of and everything they think of. And really push for these tests and for help with various specialists if you can (not sure if you are American, and how it works over there?). For me, I did find that listening to their insistence on speaking to a counsellor is what helped me - but I didn't actually have any physical signs of pain, even though I felt it. I imagine that some women may not have physical signs of pain either, and this might not be relevant to them, but then again it might be. You mentioned that you do though, so not sure if counselling would help cure you or not? But it may help with dealing with the emotions that the problem brings?

Sending you my love and support.


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Re: 'When Sex Hurts' A book that will literally change your life, using Instillagel and beware of the contraceptive pill!!

Post  Qu_789 on Sat Apr 30, 2016 10:29 pm

Hi, I just wondered if the book- When Sex Hurts' by Andrew Goldstein, would still be a relevant reference point regarding treatment?



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Re: 'When Sex Hurts' A book that will literally change your life, using Instillagel and beware of the contraceptive pill!!

Post  Sapphire21 on Fri May 06, 2016 5:02 pm


My above comment talks about this a bit - if I am honest, I am not sure. I was very emotional when I read it and so wasn't very objective. I have no idea on the quality of the study. I am sorry this answer is not much more help, and I wish you all the best of luck in finding treatment.


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Re: 'When Sex Hurts' A book that will literally change your life, using Instillagel and beware of the contraceptive pill!!

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