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» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

» Recovery story please read !!
Fri Feb 01, 2019 1:33 pm by mary jane

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

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: 7

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 …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3


'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
Gizzy
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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?

Thank-you

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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

Hiya,

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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