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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 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: 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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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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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!


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

Post  jjr23 on Sun Jul 16, 2017 1:04 pm

I can relate to a lot of what you've been through and what you're going through, especially the emotional frustration. If you want to read about my teenage/early adulthood experience to see what my experience with pain (fingering and sex) was like, as well as the emotional frustration that came with dating and boyfriends, you can read it here: http://vulvodyniasupport.forumotion.net/t2347-my-confusing-and-emotional-journey-long-and-detailed-teenage-sexual-history-included

I've come a long way since then, but still have a long way to go. Feel free to PM me xx

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I feel you girl

Post  Ilya on Thu Aug 10, 2017 12:25 am

Hi,

I read your story in full. That's really good that you explained every thing in details. Your story is very similar to mine. The difference is I am married to love of my life and after 4 years of marriage we were not able to have even one time of intercourse. I went through exactly what you went through. Step by step. The not feeling ready, the please just one finger, and the rest.

I was so shy that I even did not go to see a doctor. I thought it is just s temporary fear that I have of penetration and is related to the scary stories I have heard from people about their first night. Then after 2 years of talking to myself about seeing a doctor for a pap test was finally able to make myself go see a doctor. I did not tell her anything about my problem though. But when she tried to put the thing (I do't know what it is called) to my vagina before she takes a sample it hurt so much that I almost screamed. She was shocked and asked me if intercourse is painful too. I was so embarrassed to tel her the truth that I actually never had an actual intercourse so I just replied yes. I was so lucky that this GP knew all about the vuvoldynia. she examined me and refereed me to a gynecologist who knew all about vulvodynia and provoked vestibulodynia. He told me that it is very common. He let me hold a mirror while he was examining me so I could see everything which was really helpful for me to know where exactly is the pain and how it is irritated. Then the first thing he did was asking me to read a book! I found this wonderful. I am now reading the book and it feel really good to know all about this condition and read stories of other woman who experienced it. He also gave a Licodain to apply twice a day (morning and night) and 1 minutes before sex. So I am doing this now. This all happened a few days ago. So still not being able to have intercourse but was able to handle index finger penetration with movement which as I am sure you will understand was a huge step for me. Even my husband mentioned that this was a huge step for us and both of us are happy about it.

Now a little bit about relationship. I love my husband and I know he loves me. This issue is a huge one for us but what we did so far was figuring out other ways of sexual pleasures not involving penetration. And it worked. We both enjoy it and each time we are having sex we make sure both of us have orgasms. We still wanna get to the actual intercourse because both of us never experienced it but we don't think that's the only way of enjoying intimacy. During this long time of having sex without penetration both of us learned a lot of things about each others' bodies and sexual interest. And every few months we try new things. I am telling you all these because I want you to know relationships are not solely based on a penis entering a vagina. You are able to find someone you love and keep them by your side, get intimate without the fear of penetration. And in the mean time you can work on your treatment to be able to have intercourse in the future as well.

I suggest you read this book "When sex hurts:A Woman's Guide to Banishing Sexual Pain" by Andrew Goldstein. It has all the information you need to know about your condition. It is very well written and easy to understand. I myself am reading it right now and am in the middle of the book. I found it very helpful to have more information. Before I read this book I was so confused and scared. Now that I know all about the causes, types and treatments of PVD I feel I can manage to treat mine.

I hope it helps you the same way as it helped me.

If you read the book you yourself will know what specific type of vulvodynia you have and you will see the treatment for it right there in the same chapter.

Hope you will feel better soon and be pain free. <3

Ilya

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

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