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Tue Apr 24, 2018 4:01 pm by jennyk2

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Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
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» Cured, cyst in foot
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» HELP!! Topical cream?
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» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

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» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Confused but inspired

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Confused but inspired

Post  Alyandra on Fri Feb 04, 2011 11:53 pm

Hey everyone

First off, let me just say how heart-warming it is to find a supportive community like this. Reading about other people going through similar things I feel a little bit less isolated and freakish. It sounds like it must be tough in the US with the ignorance level of doctors and lack of resources, but here (I live in Switzerland) there's just seriously NOTHING. There's no websites or books (if I didn't speak English I'd still be completely in the dark), and most importantly no doctors knowing about this. I just found this one guy who apparently specializes in vulvovaginal health, but he's on the other end of the country! One guy! I'm sure there's more somewhere, but none of my previous doctors knew anybody and I can't seem to find them myself either.

Anyway, I really shouldn't be posting here, I have huge exams coming up in 2 weeks (they could literally make or wreck my life depending on the outcome); instead I'm here surfing the internet, reading about an issue that I've neglected for months now, that I've tried to eliminate from my consciousness as though that would purge it from existence.

I'm 21 and I've had vulvovaginal pain all my life. I've been to two gynecologists and a psychologist. Since they clearly had no idea what they were talking about, I went to the hospital here in Basel/Switzerland, which has a huge women's clinic and is one of the finest health institutions in the country (it's just been announced a couple of weeks ago that Steve Jobs came here for cancer treatment). They immediately referred me to an in-clinic psychosomatic gynecologist (which I didn't question, though maybe I should have). She was extremely nice and understanding, and I went to her once a week for about two months. But in the end I had to conclude that, once again, she had no idea about what I was suffering from. She couldn't find an organic cause and concluded that it must be all in my head. I had a boyfriend at the time, and I stopped seeking treatment after we started having sex. Which was a huge mistake, because it was the worst kind of pain I've ever had, but by that time I was seriously doubting myself and had been conditioned by the doctors to believe that it "would get better by itself", that "many young girls have this problem at first" and that "it would go away by itself once I started to become more sexually comfortable". In the end, it was a crucial reason for the unraveling of the relationship and it took me many months and a complete change of direction in nearly all areas of my life to come to terms with the break-up and my fractured identity as an individual, as a sexual being and as a woman.

So I've tried shoving the issue away for more than half a year now. I'm at about the same point I was before the relationship, wanting to find answers but being extremely doubtful and ashamed. The most debilitating thing is my avoidance of men I find interesting, and of situations that could potentially lead to intimacy, because I just don't want to go down the same road over and over again. The fear of the pain and even more so the shame associated with the whole issue is seriously impacting my quality of life.

Anyway, I don't want to be rambling on needlessly. I've been thinking of giving it another go, getting appointments, getting myself checked out for the hundreth time, but since the vast majority of gynecologists in this freakin' country have no clue about sexual pain, I feel I have to find some clues and possible approaches online first. And I'm pretty smart, or at least I like to think so, but the whole issue confuses me to no end. I know this is not a diagnostic forum, I'd just like to come to the doctor's office prepared, or I'll end up spending money, energy and time without any results at all. And if anybody could make even the tiniest comment I would be so happy about that.

- I experience pain upon penetration (also tampons, my fingers, on the exam table etc.)

- The pain is very localized. It's always been at the exact same spot (right at the vaginal entry, where the hymen is). It feels like I have way, way too many extremly pain-sensitive nerves there; that's really the only way I can describe it. It's the worst kind of pain I've ever felt in my life and it repeatedly made my body shake for MINUTES; I just couldn't control the damn shaking, and the pain often made me feel so vulnerable that I would start crying, although I usually never cry.

- The first 2-3 times I had sex (which was with another guy), I bled quite a bit and felt so sore I could hardly sit down for 2 days.

- Occasionally I've felt deep pelvic pain during intercourse, but am not sure if it's related. It's very mild, really, maybe it was caused by him touching the cervix. Not really worried about this, just wanted to mention it.

- When I inserted my first tampon (around age 15) after about the half-way point I felt such violent pain that I was crouching in a corner, trying to remain completely still, because every little movement hurt so badly, for about 10 minutes before I got the courage to try to remove it. The reason I started using tampons so late (totally unheard of among my friends at the time... I had to hide using pads because I would've been laughed at) must've have been a semi-conscious awareness that something was wrong in that area.

- It has gotten better. I tried again and again with tampons (because of the aforementioned social climate I just felt icky using anything else) and for 2-3 years it was a continual struggle. But it did get better with time. Insertion is usually unpleasant but fine, removal often accompanied by a sharp quick pain like described above when it passes the entrance. At the suggestion of one of my doctors I started training with a small dildo (didn't have any money for those dilators) and while I didn't feel that it hurt less as such, I felt I *was* getting less tight. Hard to describe. I guess from a mechanical/anatomical point of view, penetration became easier, but physiologically the results remained the same.

- I've had intense period pains from ages 13 to about 17. The first night of my period the pain would keep me awake all night, then it would get better each day. They were always irregular, but from ca. 18 onwards I sometimes had gaps of several months in between. I got on the Nuvaring at 19, which made them regular and much less painful. I got off it after the relationship ended though. Since then I've only had my period once, in early September, so 5 months ago now. I'm not worrying about it, since I don't plan on having kids anytime soon, but I wonder if it might be somehow related.

- As a child and even now riding my bike and sitting on the edge of a chair (always depends on the angle, although I'm not sure exactly how) can cause unpleasant sensations. I wouldn't call it pain, but after a while it becomes so unnerving and domineering that I can't think about anything else. It's a dull feeling of something being stretched way more than it should be.

- I've never in my life had a yeast infection, an STD or any other gynecological condtions. The tests always came back negative.

- My first gynecologist said my hymen might not be flexible or torn enough, so she cut it and then stitched some of it back up (?) I was confused by this whole process, and it didn't change a damn thing.

- The hospital gynecologist ruled out vulvar vestibulitis because she couldn't find any physical signs of it during the examination. This is what confuses me so much. Vulvodynia seems like the most likely diagnosis at the moment, yet she basically said that was impossible. Plus most women here seem to have secondary vulvodynia, and most talk about constant or unprovoked pain, whereas mine is very specific, and most seem to have some physical signs like itching or redness, which I've NEVER had, not even once. So maybe I'm all wrong here and it's not vulvodynia at all?

I know this is a huge post (and I really tried to keep it short), but on the off-chance that anybody actually read through the whole damn thing, does anybody have any comments, suggestions, opinions?

Alyandra

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Re: Confused but inspired

Post  Mouse on Sat Feb 05, 2011 3:45 am

Hey Alyandra...

Pheww that was a massive post... WELL DONE!!! It's good to get it all out. We are all different on this forum. Don't waste energy trying to find someone just like you. The fact that you are in pain is the real issue.

What most of us do is try to find a vulval clinic, a pain clinic and a pelvic floor physiotherapist. A therapist (probably a sex therapist) is a great idea as well. It helps to talk to someone in a non judgemental safe environment. Although you know this is not in your head, it's a lot to deal with every day. There are great resources with the combined power of the women on this forum and each us will have something to offer.

I thought I knew of a specialist in Switzerland but googled and found he is in the Netherlands oops! He is doing groundbreaking work and research with another vulval pain condition.

You have been through a lot! There can often be no physical signs of vulvodynia, it's a pain condition. Would you see an endocronologist if your cycle doesn't start again?

I've found a few links that might be useful, the first I've posted just to show you the Doctors name and where he is. There is an email address so why not try that? I emailed a specialist in London when mine started (I'm in New Zealand) and he replied straight away!

http://www.ncbi.nlm.nih.gov/pubmed/20108524

Try emailing the vulval pain society, they may have a list of doctors in Switzerland. This is a good resource as well.

http://www.vulvalpainsociety.org/

There are quite a few women your age on this forum. We are on facebook as well, just email Sebby - the admin if you would like to join. It's a private group so doesn't post to your wall.

http://www.pain.ch/

Welcome to the group, I'm sorry that you had to find us but hopefully we can help you find a way forward =)

Take care
Vicki

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Re: Confused but inspired

Post  Sarah001 on Sat Feb 05, 2011 12:21 pm

Hi and welcome. Vicki is absolutely right in saying there doesn't need to be any signs of redness present even for vulvar vestibulitis. There's a site at www.vulvarvestibulitisrelief.com with lots of women with provoked localised pain like yours and some of them have no visible signs of anything wrong.

Any doctor should be wiling to prescribe you either some pain medication or some lidocaine ointment, my advice is to print off a load of information and take it to your regular doctor and ask for either tablets or topical treatment. The lidocaine can be used overnight and there are some women who've found this very effective so it might be worth a try.

There might be knowledgable doctors at your GU clinic, I found a really helpful one at mine and it was that doctor who diagnosed me after I'd been given the runaround for a few months, she also referred me to a vulvar dermatologist with a specialist interest in vulvar pain conditions which I wouldn't have got through my GP. Ring a few and ask if they've heard of vulvodynia (most doctors have but don't know much detail) or pop along and ask to see a consultant.

You do sound like you may well need to see a women's health physiotherapist to see what's going on with the pelvic floor, learning to relax the pelvic floor can help alot and you can do homework with your dildo to stretch the muscles out and work on trigger points.

Don't worry about the fact yours isn't constant and unprovoked, mine started as mild vulvar vestibulitis with no visible signs and progressed to unprovoked vulvodynia over time so it's best to get started on treatment quickly to avoid it getting any worse.

A couple of books that can help are "Heal Pelvic Pain" by Amy Stein and "Ending Female Pain" by Isa Herrera and both are available on Amazon and would be good info to take to doctors.
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Re: Confused but inspired

Post  Sebby (Admin) on Sat Feb 05, 2011 10:45 pm


Hi Alyandra and welcome to the forum

As the girls said we all have diferences as well as similarities in our condition and bascially Vulovodynia simply means Vulval pain so I really dont understand why the dr said it was impossible?

and even with vulvar vestibulitis there does not need to be any visible signs

another good website is http://www.nva.org/ which is the national vulvodynia association in the us.

Im from the uk and our members are from all over the world.

Like you I have had pain using tampons and with penetration since I was a teenager.

I first thought it was just anxiety related vaginismus (an involuntary tightening of the vaginal muscles) I do have that but now I strongly beleive It was cos I had vulvar vestibulitis and was simply anxious cos of the pain..it wasnt all in my head!

In the last couple of years I pretty much have the pain constant but its worse with contact even with sitting, tight clothes etc as avoiding contact with the vulva is pretty impossible I get pain regularly!

Its terrible that you have hardly any drs or resources for this! The uk is not much better. Im lucky my GP although not a gynae is simpathetic and knows a lot about painkillers

I have been prescribed an anticonvulsant 'pregabalin' which is supposed to calm the nerves in the body..I will have to wait and see if this helps

Im also due to start some home biofeedback pelvic floor training..from this site

http://www.vulvodynia.com/

I am waiting for the online consultation (dr is in usa) just waiting for him to email me back..he'd better hurry or I'll call his office no matter how much it costs!!

I ended up with this option due to the lack of resourses in my area

I would suggest to you to go to a pain clinc and look at either amitriptaline which is an anti depressant but also works as a pain killer (i might not have spelled that right!) or an anticonvulsant. Start them slowly

Also see if you can get some pelvic floor work done with a womens physio or try some home training to start with while your looking for a practitioner. The Ending Female pain book has looks of pelvic floor work in it to get you started

I too avoid men and intimacy! its like I dont see the point as it leads to pain and I also feel like im wasting their time..I dunno maybe i'll change my mind if i can get some relief..

Good luck and let us know how you get on


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Re: Confused but inspired

Post  Sebby (Admin) on Sat Feb 05, 2011 11:01 pm


I forgot something lol

I would also get the dr to find out exactly why your periods have stopped for the last few months. Get everything looked at as you never know what is related!
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Re: Confused but inspired

Post  Reader on Mon Feb 07, 2011 6:11 pm

Hello Alyandra,

Sorry to hear about your pain, it sounds alot like mine but as most have said before pain/cause/diagnosis is different for everybody.

The Vuval Pain Society is a great resource for info on your condition, I bet its so frustrating not to have a doctor who understands and cant offer any advise and support.

There are some things you can do without medical aid which may help such if you arent already doing them such as: wearing loose fitting cotton underwear and avoid tights or tight trousers, making sure you use perfume free products that arent harsh to the skin(my Dr recommended washing my hair in the sink rather than the shower so that even shampoo dosen't irritate my vulval area).

Small steps but hopefully you can find someone or something that works for you Smile

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Re: Confused but inspired

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