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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 …

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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: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

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: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


Provoked Vestibulodynia - VIRGIN - PLEASE READ - DESPERATE!!

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Provoked Vestibulodynia - VIRGIN - PLEASE READ - DESPERATE!!

Post  ELMS20 on Thu May 04, 2017 1:14 am

Hello Everyone,

This is my story and I really hope there is someone out there who can relate, give advice or has been cured!! This post is going to be very long and quite detailed so apologies in advance, but I would really appreciate if you could read it all!!

I am a 19 year old girl who recently come out of a 2 and a half year relationship. From April 2014 to January 2015 my boyfriend and I enjoyed being intimate however nothing was every inserted into my Vagina just out of personal choice, and to be honest I'm not actually quite sure why that was, I think it was because I just didn't feel ready. In March 2015 my boyfriend (upon my request) tried for the first time to insert one finger into my vagina. I remember at the time i thought it was "really painful" however looking back now it REALLY wasn't, It was just a slight discomfort and I was VERY tense but after a while was completely fine and there was no pain at all and he was able to do slow penetration with the one finger. Despite this, I did not like it nor did I find it very pleasurable so we never did it again.

Then in October of 2015 we decided as a couple that we wanted to try sex and take my virginity as he had already lost his. (The fact that I had only endured penetration ONCE with ONE finger never entered my mind and i just thought that losing my virginity would be a slow but fairly easy/okay process). So towards the end of October 2015 I started on a combined Oral contraceptive called 'Rigevidon' (which was apparently a new version of Microgynon). I also went onto this pill because I had always suffered from EXTREMELY heavy periods and it was known to calm them down a bit (which it did).

Finally in December of 2015 we had the right opportunity and I felt ready to lose my virginity. However, it wasn't how I thought it would be at all and I feel as though this was due to many reasons one being that we were plain and simple naive. In the past me and my boyfriend were extremely intimate and passionate, but this night when we decided to have sex for the first time we did not do any foreplay beforehand or even kiss. To put it to basics all we did was, grab a condom, a tonne load of lube and tried to insert his penis (which I thought would be okay - and the plan was that once it was in we would start to kiss etc). Now this is when the problem started. My boyfriend would get to a point of insertion where it genuinely just felt like my vagina would stretch no more and that is the only way to describe it. It would get to a certain point and it would just hurt so so much. We tried on 2 more occasions (the exact same way as the first) and had no luck.

From the end of December 2015 our relationship went rapidly down hill. I completely shut down emotionally from myself and him. We was NEVER intimate and we rarely even kissed and hugged. In the April of 2016 he took me to the Shard Hotel in London whereby that night he tried to start something off but I just pushed him away - the thought of being intimate in general just made me feel sick to my stomach - I will never be able to explain how horrible that feeling was. I began researching too see if I was 'A Sexual' as I did not know what was wrong with me. However that night an idea came into my head, I wanted to see if any penetration was possible. We began to be intimate and I told him that I wanted to try finger penetration but as he made his way down to that area, I froze and immediately tensed up, the fear I felt was something Id never felt before. After a while of relaxing me by taking moments to just sit on the bed and look at the view over London I finally felt relaxed enough for him to try, and when he did it WAS SO EXCRUCIATINGLY PAINFUL!! It was a sharp burning pain and he hadn't even got his whole fingernail in. I broke down - I thought back to the year before at how I could quite comfortably have finger penetration to now not even being able to withstand his little finger!! Once again I shut down emotionally.

In June 2016 I had my first appointment with a gynochologist who performed an examination which was very painful in which she diagnosed me with 'severe vaginismus', which I was very upset about but was told that it was one of the most easily treated vaginal pain conditions so I felt optimistic.  Our relationship was awful and by early July we was in Greece together for a week, where we was not intimate once and maybe kissed twice. At the end of July i decided to come off the Pill as there was no hope of us having sex, it was making me EXTREMELY depressed (sometimes suicidal). By September 2016 we had separated without trying any penetration and it was horrible, still to this day I get emotional as I had liked that boy since I was 12 years old. I would look back and think to myself how happy we was, and how much I wanted to lose my virginity to him. I began having counselling for what I thought was 100% Vaginismus.

In December of 2016 my Mum was seeing a doctor at a private hospital near to where we live, a doctor who supposedly also worked in Harley Street in London now and again. My mum mentioned me in one of her appointments and the doctor requested to see me, which was a nice surprise and her reputation made me feel excited and optimistic. Upon seeing her I had been off of the pill for 5 months and she spoke to me and wrote down my whole history of everything I have just written for you here ^.  She then performed an examination whereby she just looked and felt around the opening of the vagina. She then without warning tried to insert a finger... and it was the worst pain I had ever felt when something was trying to be inserted. It was worse than when I had seen the gyno at the hospital 5 months prior and worse than when my boyfriend and I tried to have sex a year earlier. I was distraught - It had got worse. This is where she had diagnosed me with Provoked Vulvodynia/Vestibulodynia. Once she had explained the condition to me, and I had completed some research of my own - I was heartbroken.

She then prescribed me with amitriptyline, starting on 10mg a day which would be increased by 10mg every 10-14days. She wanted me to get up to 70mg because she said that "that is when women begin to notice a real difference". A few days after that appointment I was with a boy (not my ex) that I had been good friends with for 5 years, someone I trusted. We became intimate and like my ex when he hand moved down to that area I immediately tensed up and stopped the whole thing - not even allowing it since what I had experienced only a few days earlier.

Now to today. Here I am, 5 months later on 60mg of amitriptyline, feeling exhausted every single day due to the horrible side effects - and even weirdly experiencing back acne, acne?! I have never experienced acne in my life. In general and luckily my whole family have always had relatively good skin, skin that really wasn't prone to breakouts. I also noticed in 2015 (after starting the pill) that my vaginal odour had got very strong, to a scent that was not very pleasant that my boyfriend also noticed and commented on numerous times. Along with the new smell my discharge had increased so in 2016 I had a few swabs done which all came back fine. Still to this day this "new strong smell" has stayed, is there a link between vulvodynia and vaginal odour?

I had a follow up 2 days ago whereby the doctor said to me "I'm going to refer you to a specialist at Guys Hospital in London, it will be 8 weeks before you get an appointment, in the meantime just carry on with the amitriptyline and try and get up to 80mg" and that was it, no examination NOTHING, nothing to see how I was doing or if the medication was working, just more waiting, being passed pillar to post; (I had also began having acupuncture to which i was keen to see if that had helped). She sent me away feeling deflated and not cared about, once again being passed to another so called "expert" who would probably feed me the same crap of "you just need to relax" like various other GP'S had.

Now some of you might be thinking, "why don't you try and insert your finger yourself to see if the tablets have been working?", and trust me, I have been trying since last November to see if I can insert a finger, and the fear and psychological damage has just been so bad that I PHYSICALLY CAN NOT BRING MYSELF TO DO IT. I have tried and tried AND TRIED and I just cannot bring myself to do it.

Also if anyone was wondering I do only (luckily) get this pain when any form of penetration/insertion is attempted, I cannot begin to imagine what it must be like to suffer with this pain 24/7.  Sad  I just want to be able to be intimate with someone, it gets me so so down. I have pushed so many boys away because of it and all I end up doing is spending my nights crying because I just want to be able to share an intimate, beautiful moment with somebody and I can't - the pain upon penetration is just too much.

Has this been caused by the pill? Nerve damage?! Before the pill I could have slow full finger penetration now just the touch of the entrance of my vagina is excruciating - why has this happened Sad


Thank you so so so much for reading. If you can relate please comment as anything would be appreciated, or if you know anyone that can whether they are a user or not please can you get them to contact me.

Thank you x

ELMS20

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A couple of things

Post  Gill on Sat May 06, 2017 8:48 pm

Hi,

I'm sorry to hear your story, it sounds awful. I hope this specialist at Guys is helpful.

It sounds like this has had a massive toll on you emotionally. I would suggest finding out whether you can speak with a psychosexual counsellor; they won't be able to help with the pain, but they might be able to help you with the emotional/relationship part of it, as you said you keep pushing people away. I spoke with one after going to a GUM clinic, and she was fab, only saw her a few times, but it really helped.

The other thing you could try is something my Physio suggested, which is starting off massaging your inner thighs, doing that for a few weeks, and gradually working your way in over weeks/months. It could help you to work out what's happening down there!

Hope things get better at Guys!

Gill

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Re: Provoked Vestibulodynia - VIRGIN - PLEASE READ - DESPERATE!!

Post  ELMS20 on Sat May 06, 2017 9:35 pm

Gill wrote:Hi,

I'm sorry to hear your story, it sounds awful. I hope this specialist at Guys is helpful.

It sounds like this has had a massive toll on you emotionally. I would suggest finding out whether you can speak with a psychosexual counsellor; they won't be able to help with the pain, but they might be able to help you with the emotional/relationship part of it, as  you said you keep pushing people away. I spoke with one after going to a GUM clinic, and she was fab, only saw her a few times, but it really helped.

The other thing you could try is something my Physio suggested, which is starting off massaging your inner thighs, doing that for a few weeks, and gradually working your way in over weeks/months. It could help you to work out what's happening down there!

Hope things get better at Guys!



Thank you so Much for taking your time to read my story and showing the sympathy you have; it means a lot to talk hear from people who understand. Yes, I have been seeing a counsellor for general anxiety who is now referring me to a psychosexual counsellor and physiotherapist who specialises in the pelvic area which I am looking forward to.

I have also been doing a lot of research and have found that a lot of muscle tension, injuries and even trapped nerves have been related to this condition, and upon seeing my acupuncture guy he has found that a lot of my muscles are in fact extremely tensed and well not in great condition at all so I am excited to see how the acupuncture can help.

All day yesterday and last night my vagina felt completely different, whenever pressure was placed on it from my clothes or hands I didn't have that tender feeling that I usually have so I decided to try and insert a finger again, and I got a little way in, it was the most I had in nearly two years I was so ecstatic! But the fear set in again and I wanted to leave it on a good note so I stopped. However today it is back to normal the same tenderness again.. it was very random Sad

The lady from the private hospital has agreed to see me on the 18th again to examine me so I'm optimistic for that.

Once again thank you so much for your reply x

ELMS20

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Re: Provoked Vestibulodynia - VIRGIN - PLEASE READ - DESPERATE!!

Post  Gill on Sat May 06, 2017 10:24 pm

Wow, it sounds like you have had some progress then, through the research you've done and the work to act on it!

It is definitely baby steps for most of us, I think, and it is important to recognise the improvements when they happen. I know sometimes it can feel like in comparison to the effort you've put in, and the size of the problem, the improvements are tiny, but try to notice them! It will help a lot with keeping you motivated.

Drs know so little about what's going on it's really up to us to keep researching and asking for different treatments etc until we find something that works for us.

It's cool that you've found an acupuncturist who can help with this; I vaguely remember reading about the idea and thinking 'how on earth does one find a gynae-acupuncturist?!'

I'd still recommend trying to find a gynae-physio to visit as well as the acupuncturist when you feel you have the energy. They should be able to advise further on the muscle tension and control.

All the best, sounds like you're determined and on a good track, and I think determined is the most important!

Gill

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Re: Provoked Vestibulodynia - VIRGIN - PLEASE READ - DESPERATE!!

Post  ELMS20 on Sat May 06, 2017 11:49 pm

Gill wrote:Wow, it sounds like you have had some progress then, through the research you've done and the work to act on it!

It is definitely baby steps for most of us, I think, and it is important to recognise the improvements when they happen. I know sometimes it can feel like in comparison to the effort you've put in, and the size of the problem, the improvements are tiny, but try to notice them! It will help a lot with keeping you motivated.

Drs know so little about what's going on it's really up to us to keep researching and asking for different treatments etc until we find something that works for us.

It's cool that you've found an acupuncturist who can help with this; I vaguely remember reading about the idea and thinking 'how on earth does one find a gynae-acupuncturist?!'

I'd still recommend trying to find a gynae-physio to visit as well as the acupuncturist when you feel you have the energy. They should be able to advise further on the muscle tension and control.

All the best, sounds like you're determined and on a good track, and I think determined is the most important!




Thank you, yes I have done so much research its ridiculous haha! Laughing

You are so right it is baby steps and I guess we have to appreciate even the littlest of changes/improvements! I know it really sucks that there isn't a lot of understanding towards vulvodynia, despite how much it can affect a women and her partner emotionally. Yeah the acupuncture is good and same I looked for one but had no luck, but the guy that is working with me helped my mum before with a trapped nerve problem, he is amazing and charges me less than his usual rate, constantly emails me new articles on vulvodynia and is even completing a case study on me to help others in the future!!

Yes definitely I want to get into some sort of physiotherapy for sure! So how is your vulvodynia is it provoked or generalised? Thank you so so much, all the best to you too! Yes thats very true, we have to stay determined!!x

ELMS20

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RE

Post  Gill on Sun May 07, 2017 10:37 am

Mine's entirely provoked and localised to the vestibule. I had surgery a few months ago to remove the area between 3pm and 9 pm on the clock face, and that area is a lot better. (dare I say, fine).

I was worried at the time when the surgery happened that they weren't taking out enough tissue, and the areas on either side of 3pm and 9 PM still hurt too much to try sex. My doctor said I should wait until least six months to see if there are any more improvements, because surgery on vaginal tissue heals slowly, so the pain I can feel might not be vestibulodynia, just healing.

Will see another consultant in a few months, and keep doing physio in the meantime!

Am very pleased with the improvement, but I do have to remind myself to be pleased, because it's still an effort to get a tampon in, never mind something else! Still, it isn't a superhuman effort to get the tampon in, like it used to be, and I try to concentrate on that!


Gill

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Re: Provoked Vestibulodynia - VIRGIN - PLEASE READ - DESPERATE!!

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