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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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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 …

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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 …

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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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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: 3

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

Fri Mar 09, 2018 6:17 pm by Tunes25


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: 10

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 …

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'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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