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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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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 …

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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.

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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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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 …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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 …

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Does everyone get told the same from their gyno

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Does everyone get told the same from their gyno

Post  Ceriane on Wed Nov 07, 2012 7:26 pm

I keep hearing about people who have been made to feel this is purely a sexual problem and purely psychological.....but my pain is there all the time....even if there was no such thing as sex I would still have pain in that area....is anyone else in the same situation...If I've been to anyone about it it's all been mainly about ruling out things like infections....I've never been made to feel it's in my head or it's because I'm somehow uptight about sex....as far as they are concerned it might not even feature in my life. I have had sexual relationships in the past, but I've even heard of virgins having vulvodynia....which proves it's not an STD or a psychological condition about sex.....I've never heard of lesbians or asexuals having it though strangely (I wonder why that is....) it's always heterosexual women......not that I am (I'm completely straight) but it would be interesting to know if there are women who don't have sex with men, or any intention of that who have it.... and do they get told the same rubbish that it's all in their minds and that it's caused by a psychological issue with sex???? I've never been told that BTW but I'm constantly hearing about people who are....When you go to the doctors do you present with pain during sex, or just say that you have pain in that area. I think it makes a difference to how they react....I always just say I have pain down there, and don't mention sex....so no one has ever said it's in my mind. They ask if it affects my sex life obviously....which it really does, badly.....

Ceriane

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It's not all in your head!

Post  jen007 on Thu Nov 08, 2012 4:47 am

Ceriane wrote:I keep hearing about people who have been made to feel this is purely a sexual problem and purely psychological.....but my pain is there all the time....even if there was no such thing as sex I would still have pain in that area....is anyone else in the same situation...If I've been to anyone about it it's all been mainly about ruling out things like infections....I've never been made to feel it's in my head or it's because I'm somehow uptight about sex....as far as they are concerned it might not even feature in my life. I have had sexual relationships in the past, but I've even heard of virgins having vulvodynia....which proves it's not an STD or a psychological condition about sex.....I've never heard of lesbians or asexuals having it though strangely (I wonder why that is....) it's always heterosexual women......not that I am (I'm completely straight) but it would be interesting to know if there are women who don't have sex with men, or any intention of that who have it.... and do they get told the same rubbish that it's all in their minds and that it's caused by a psychological issue with sex???? I've never been told that BTW but I'm constantly hearing about people who are....When you go to the doctors do you present with pain during sex, or just say that you have pain in that area. I think it makes a difference to how they react....I always just say I have pain down there, and don't mention sex....so no one has ever said it's in my mind. They ask if it affects my sex life obviously....which it really does, badly.....


Ceriane,

I have been struggling with vulvodynia for about 6 years now. I've never had this problem, but sadly yes...doctors who are not familiar with vulvodynia do tell women that it's all in their head.

I have read many blogs from women who suffer with vaginal pain and there are some lesbians who do in fact suffer from vulvodynia. There are a few ways that women can get vulvodynia. You could get it from being sexually abused, taking birth control or you could be born with it. In my case I was born with too many nerve endings in that area. It's not psychological, but It can turn into that if you let it. My doctor told me I have PVD (provoked vestibuldynia) which is when you have vaginal pain only on contact. She explained it to me like this, it's like if you were to put your hand into a fire you would immediately pull it out because it would be burning you. That's what it's like when you have PVD...when you are touched or being penetrated your muscles tense up and try to pull away because it causes you pain. If you don't get help it will get worse.

When I first went into the doctors I told them it hurt when I tried to have sex or if I touched myself. It is worth mentioning to the doctor that it is also associated with sex. If they tell you it's all in your head then you shouldn't continue seeing them and find another doctor.

I hope I was of some help to you.
Let me know if you have any questions!

-Jen

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Re: Does everyone get told the same from their gyno

Post  Ceriane on Thu Nov 08, 2012 6:47 pm

Thanks Jen....

Mine started all on it's own...I never had pain during sex, and then one day I woke up with burning/pain in my vagina....I just thought I had a yeast infection or something like that.....then it got a LOT worse and I was in really bad pain....pain that would put me off having sex in the first place, I was in agony! I thought I had an infection or that I had an STD, (even though we'd always been careful) so the first thing I did was to go to the GUM clinic and I asked my boyfriend at the time to do the same....no way could I have even contemplated sex I was in so much pain. Then after a few months (of pain and stress) it subsided and I thought I was pain free and okay to have sex again, and to begin with I was fine, then I noticed burning, soreness during and after sex, then again and again.....and then it came back. Right now I'm in pain all the time....non provoked pain....even if sex didn't exist I wouldn't want this pain (I'm having a mild day with it today, but sometimes it is bad). I think it is linked to the fact that I have pernicious anaemia, because that affects your nervous system, and it lessens greatly when my B12 is okay. I don't think it's a common symptom of that, but a lot of women with PA seem to get it.....I'm so embarrassed to admit it, but I've not dared have sex for over 2 years....in fact I'm reluctant to even get into a relationship because I'm terrified of how the guy will react to this condition.....it's changed how I feel about my body, about relationships, sex and even love.....and....you can't talk about it as it's so personal and people are so funny about these things. When I go to the doctors I do mention that obviously it causes sex to be painful or even out of the question....they've never made me feel like it's in my head, they tend to go down the ruling out infections route......but when I go I tend to worry more that they'll think I sleep around and that I've caught an STD (which they've reassured me several times it isn't) rather than that they'll think I'm frigid and it's all in my head....maybe that's because I'm in pain all the time, rather than just when I try to have sex.....maybe doctors think that because they are confusing it with another condition called vaginismus which is a psychological condition, although vulvodynia and vulvar vestibultitis can lead to that as well.

BTW I've bought a vaginal PH tester kit which shows that I have no sign of infection....which reassures me as having pain in that area makes me feel really dirty.

When I went to the doctors I said I just want to be able to have pain free sex like everyone else, and she said "you want to be pain free in general, with or without sex" which is true.

Ceriane

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Re: Does everyone get told the same from their gyno

Post  jen007 on Thu Nov 08, 2012 7:23 pm

Ceriane,

Often vulvodynia is mistaken as a bacterial infection. This was the case for me. I had to see 4 doctors until I found the right one who knew this was no infection.

I would recommend trying pelvic floor therapy. It's physical therapy that help relax and stretch your pelvic floor muscles. That and a combination of dilators. After that there isn't really much you can do after that except for surgery, which should be a last resort. I had the surgery this past summer (a full vestibulectomy). So far it has been a success, but only time will tell.

I know that having this pain disorder is very hard to deal with. I'm lucky to have a good support system around me. I've had my struggles though and have felt very alone. I don't personally know anyone with vulvodynia, but talking on these message boards really help ease the psychological pain. It's especially hard when you tell someone about it and they try to understand or relate, but can't. It's a very mysterious condition. The vestibulectomy isn't 100%, but it's helped me so far.

If you have any questions please let me know, I want to help as much as I can!

-Jen

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Re: Does everyone get told the same from their gyno

Post  Ceriane on Thu Nov 08, 2012 7:24 pm

Can I still have a relationship?

How do I tell them?

I'm also a strep B carrier is it anything to do with that?

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Re: Does everyone get told the same from their gyno

Post  jen007 on Thu Nov 08, 2012 11:10 pm

Ceriane,

Of coarse you can! You are entitled to have a relationship just as anyone else would!

I've had the same boyfriend for 5 years now, but we started dating before I knew I had vulvodynia. So I can't give you any personal experience, but I can tell you I have thought about that before myself. That is if I were to be single how would I ever date ? How could you explain this to a guy? I wouldn't tell the guy, not until things got serious. If I were to be in a new relationship with someone I'd just tell them that I want to take things slow and get to know them before jumping into bed. Then when you think you're ready to be intimate tell him. If he's the right guy or at least a decent one...he should understand. Besides there is much more you can do in the bedroom than just sex! Haha! You can still have a normal active sex life with out having actual penetrative sex.

As for strep B...I have no clue. To be honest I've never heard of it before. Maybe you could enlighten me?

-Jen

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Re: Does everyone get told the same from their gyno

Post  Ceriane on Fri Nov 09, 2012 2:14 pm

Thanks Jen....your brilliant!!!

I am actually starting to feel more positive about it all since joining this forum, about managing it and then hopefully curing it, and also about how to handle issues like relationships/sex etc while I have it. When I first joined I thought it was going to ruin my life....and hearing so many negative stories didn't help...but there is definately light at the end of the tunnel....and in a way I've learned a lot from going through this....it doesn't have to be a sob story anymore.....

Strep B is something they picked up on a smear test....or a test I had for what could be causing my pain anyway. They say it's unlikely to be causing my symptoms, as it's usually symptomless, but that I am a carrier. This means that when I become pregnant, I will have to tell the midwife, because I will need to go on intravenous antibiotics when I go into labour, to prevent any damage to the baby.

Ceriane

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Re: Does everyone get told the same from their gyno

Post  jen007 on Sat Nov 10, 2012 4:10 am

Ceriane,

I hope I can help make a difference in some women's feelings towards vulvodynia. I know it's such a hard thing to go through. The pain that is so unbearable and just being embarrassed about now being able to be "normal". Vulvodynia isn't 100% curable, but doctors and surgeons are getting close. The surgery has helped me tremendously so far. My goal on this forum is to try to show women that you don't have to be afraid of the surgery, that not everyone whose had it has had an unhappy out come.

We've all been down the same road of despair, but it doesn't always have to be that way. Life is what you make of it. Hopefully one day there will be a sure fire cure! But for now we all have to try to stay strong and do what we can to make ourselves feel better.

If you ever need to talk or have any questions about anything please do let me know!

jen007

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Re: Does everyone get told the same from their gyno

Post  Ceriane on Sun Nov 11, 2012 8:02 pm

Thanks Jen.....

Will do....

Your right, life is what you make it and with a positive attitude there is a way around everything. I also believe, sex is what you (and your partner) make it, which is why some people enjoy sex and others don't.

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Re: Does everyone get told the same from their gyno

Post  Alana3 on Sun Dec 02, 2012 12:00 am

Im a strep b carrier my doc says it's not related it just sucks

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i've heard alot from many gyns

Post  dinda06 on Mon Feb 18, 2013 8:51 pm

Hi I am new here and couldn't help but to reply.
I have been to over 10 differnet gyn's trying to get someone to listen to me. No gyn wants to listen to me because I am a sex abuse survivor who is also asexual. I've had vulvodynia since my very early 20's going on 3 years now. I have been told it is all in my head because of the abuse but I'm with you. Even if there wasn't a thing called sex and if I wasn't sexually abused I would still be hurting. I have no objection to sex except that I am not nor will I be married. I don't believe in sex before marriage (yes, even though I am not attracted to men or women).

I finally got a family praticioner to listen to me and she did a pap that almost killed me. I blacked out from the pain and that's when I finally got some information on what I have. She tested for the usual and also did another test (q tip). The female specialists I have been to have all been very uneducated on the condition and one even went so far to tell me that it was all in my head but she wanted to cut me open and look anyway. I was totally agianst that happening. Anyway, I just wanted to let you know that I am an asexual who has vulvodynia. I also agree that vulvodynia has nothing to do with sex or any kind of psychie.

Here is something not me or my doctor can figure out... maybe ya'll can help. I have swelling and when I have a bad day my vaginal opening actually swells shut and becomes inflamed. Those days I don't sit or move very much. Anyone else run into this? On bad days most of my symptoms are visible to the eye... swelling, inflamation, hot to the touch as to have fever, severely red and irritatied... Anyone else in the same boat?


Last edited by dinda06 on Mon Feb 18, 2013 9:01 pm; edited 1 time in total (Reason for editing : spelling errors)

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