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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 …

Comments: 8

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.

Comments: 1

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 …

Comments: 4

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 …

Comments: 6

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 …

Comments: 35


I'm scared

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I'm scared

Post  Lynn on Wed Sep 28, 2011 3:41 am

I'm 15 years old. My grandma and her sisters all had this, my step mom and her sisters, my step sister. They all had it. But they don't offer the same comfort as my own mother would... My symptoms started a few months ago, but I've had PTSD for over a year. History of sexual abuse. Is there anyway to stop this permanently? Anything, kill all nerves in me if I have to. I just got married a month ago... My husband was just starting to show me that sex didn't have to be violent, or controlling, or painful... and now this. Please, I don't care how, but there has to be a way. Does anyone know of a permanent solution to this problem?

Lynn

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Re: I'm scared

Post  Mette on Wed Sep 28, 2011 11:09 am

Hi Lynn
First of all I'd like to tell you that I feel for you. It's not easy having this condition at such a young age (I was 17 myself when it started) and it sounds like you had a very difficult life so far.

There are lots of treatments for vulvodynia, but it's difficult to say which one is right for you, because every case is different.
Have you seen a doctor? If so what did she/he tell you?
The first thing you need to rule out is yeast or another kind of infection. If you have an infection it can be very easy to treat, but you need to get a doctor to take the tests.
If it turns out you don't have an infection there are lots of treatments you can try.

One thing I think this forces you to do is to take your own feelings seriously. There is a very powerful emotional componant to this and it is important to be comfortable and relaxed when you have sex otherwise it will hurt. To me this means that I have to make myself say no, if I don't feel like it eventhough I'm scared that my boyfriend will be angry or disappointed. Most of the time he understands, but even if he didn't it's still my body and I need to trust that whatever I feel is okay. That's important for all women to realise, but it's especially important to us, because it will worsen our condition if we don't.

How does your husband feel about this?

There is a way and I'm confident that you will not suffer from this always, but there's no easy answer and it is going to take som time.


Mette

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Re: I'm scared

Post  Lynn on Wed Sep 28, 2011 1:17 pm

My husband is really good about this. Very good, an odd duck you might say seeing as he's just a year older than I am. I saw a few doctors, but people keep talking about tests and things and no one really did anything... it says that I have PTSD in my file, they're probably worried more contact would require sedation. That's what the doctors and counselors said the first time I went. Isn't there a way to just deaden all your vaginal nerves?

Lynn

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Re: I'm scared

Post  Mette on Sat Oct 01, 2011 1:00 pm

I'm really glad to hear that your husband is so great about all this. He sounds like a great guy Smile

If you want to try to numb your nerves, try to use some lidocaine creme before sex (and any other time it hurts). You can get it over the counter at the pharmacy. It takes 30-45 minutes to work, so what worked really well for me was to put it on and then have foreplay for a little over half an hour. By the time the creme worked I would also be really turned on, which made everything a lot easier.
It's also really good to try and touch yourself (not in a sexual way) to explore where the pain is and how your body reacts. Also try to have sex in ways that doesn't hurt you (without penetration). That was really important to me since all the pain really killed my sex drive and it's nice to get in touch with that side of yourself.

Let me know how it works out for you and tell me if you need to talk about anything...

Mette

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Re: I'm scared

Post  Lynn on Sun Oct 02, 2011 7:55 pm

It hurts all the time though... how long does it last? And isn't there a way to do that permanently? Nerve taps and such, I've heard of permanent ones. I just want this to stop NOW. I know there are surgical nerve blocks, done by removing tissues or permanently damaging the nerves therein. ...My pain causes my panic attacks, and my panic attacks cause my pain... I can't function normally anymore

Lynn

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Re: I'm scared

Post  Mette on Mon Oct 03, 2011 8:41 am

I understand your desperation. I think every woman on this forum has felt that way at some point.
But you have to be patient. It's true that there are surgeries, which might help, but there is also a very high risk that it will just make your problem a lot worse.
There are lots of little things you can try. The lidocaine creme is a good one. The only side effect is some stinging in the beginning and there is no way of overdosing it, so you can use it as much as you need. If you do it 5-6 times a day you should be covered. You can also put some on a piece of cotton and sleep with it in your underwear. Some women are helped permanently by this, but it will take some time (3-6 months at least). My gyno suggested me to touch the area where it hurts for about ten minutes a day (not in a way that it really hurts). It is supposed to deaden the nerves because it gets rid of the association between touch and pain. But all of it will take some time.

I'm not a doctor, but it seems to me that your vulvodynia is very closely linked to your PTSD. Are you seeing a psychologist to help you with your panic attacks?
Maybe if you overcome some of your traumas it will also help with your vulvodynia. Lots of women who have been through sexual abuse get problems with cramps in the vagina for a long time afterwards. It's a perfectly natural reaction, because your body associates that area with something traumatic.
I know that this is not what you want to hear, because this is not a quick solution either. It takes a lot of courage to deal with PTSD, but I think it's the only really permanent solution for you.



Mette

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Re: I'm scared

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