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» It feels like I’m going to have pain forever
Yesterday at 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Yesterday at 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Yesterday at 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 1

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: 9

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 0

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

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 …

Comments: 5

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 …

Comments: 0

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 …

Comments: 0


My story - scared 21 year old

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My story - scared 21 year old

Post  rosina on Fri Dec 07, 2012 3:44 pm

Hello!

I am 21 and have been diagnosed with vulvodynia/Vestibulodynia. Quite frankly it has ruined my life! I only have this pain when it is provoked, i.e through wearing tampons or through having sex. Needless to say the relationship with my long term boyfriend has greatly suffered!!

I've been suffering from this for over a year and a half and I can't tell you the frustration I've felt seeing numerous doctors/gyneacologists who tell me it is in my head when it very clearly isn't as I am sure a lot of you will relate to.

I got so fed up with everything (test after test and numerous thrush cures) that although we couldn't afford it in the slightest I went to see a private gynecologist - one of the best in London and he gave me Botox injections. (£500+) but at this stage I was willing to pay anything and do anything to get rid of this problem. I had 7 injections, 5 on the outside and 2 on the inside. It did cure the pain on the outside but the inside pain remains. I did not go for another treatment as quite honestly I personally found the treatment quite horrific.

I decided to go to a different gynecologist and she told me to use the dreaded dilators for 6 months... which I did religiously but with no difference in the slightest.

I now am seeing a new doctor who has prescribed me Nortriptyline but apparently if that doesnt work there are other ones to try. Has anyone tried using these treatments??

I'm not giving up hope! although some days it is very hard!!

I have a fantastic relationship with an amazing man who understands but I feel there is only so much time he will put up with it for - regardless of what he says. Each day is taken up constantly thinking about it and wondering if each new treatment will work and when it doesn't I worry about how to break the news to my other half.

This thing is taking over my life!! Sad I'm so unbelievably scared that it won't ever go away. has anyone else had a similar experience??

Rx


rosina

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Re: My story - scared 21 year old

Post  cba321 on Sat Dec 08, 2012 12:44 am

Hi Rosina

Yes I have been told that it was all in my head....by idiots who call themselves doctors, from reading this forum most if not all of us have been told that at some point. However I now have seen doctors and health professionals who don't believe it is all in my head.

Did you start doing dialators as soon as you got the botox injections?? botox alone won't help the problem at all, it is just a temporary paralyzing of the muscles for about 6 months giving you time to stretch out the muscles before the botox wears off. I had the botox injections but have had very strict Physio since 5 days post the injections. The physio I have seen has done randomized control trials on the botox injections with Physio post the injections so is very experienced. I am only 3 months in, so I have another 3 months of botox, so it remains to be seen if the physio will work to stretch the muscles out and stop the spasms.

Maybe potentially starting with a physio who specialises in pelvic floor conditions and pain may help. I have also just started seeing a psychologist (one who specialises in sex and pain) and I am finding that very helpful. I am not in a relationship and have been petrified for years to start one up again but the psychologist is helping me to not place so much emphasis on the vagina - there is lots of other great things that you can do all with the same outcome as vaginal sex! Even though I already knew that fact, I don't think I really absorbed the implications until now...and how by eliminating the pressure for vaginal sex, the pressure I feel, the insecurity I feel, the depression diminishes also = a healthy potential for a relationship - I know it isn't the greatest plan but is a plan nonetheless and is one way to not let your vagina take over your life. Additionally I am doing quite a lot of therapy to decrease the actual pain.

It is a very scary experience, but an experience I think that gives you a very interesting outlook on relationships and human behaviour. It is a very maturing experience not just a scary one

cba321

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Re: My story - scared 21 year old

Post  lauramw on Sat Dec 08, 2012 1:54 pm

rosina

I've also had shitty doctors/people who have made me feel like a total freak and haven't respected that what i am going through is serious. i have never had botox injections, that sounds somewhat traumatising, i have tried the most natural approach possible being physio therapy, pelvic floor work including dilators (which honestly sucks so bad sometimes but i think does help - try making it a sexual process, not a clinical one) and seeing a psychologist who helps me get perspective and not making my vulvodynia the centre of my entire universe.

I've found that there are good people out there and men are more understanding than you might expect. i think if they aren't understanding, why would you want them around anyway? love goes far beyond sexual acts. i think the most important factor of this whole awful illness is your emotional reaction to it. my vulvodynia is so so responsive to my stress and anxiety, you have to be good to yourself and then your body will follow.
it terms of other medical treatments - i was on endep 50mg for 3 years but loathed the drowsy side effects so now i am not on any medication which is scary but better than putting chemicals into your body. i have heard they are clinically trialling endep as a topical ointment, not as a pill, so your body is not effected and you can use a much higher dose just on the localised area. this is very exciting, keep your eyes peeled.
i think there is hope - in my 3 1/2 years of suffering, about half that time i have been progressively experiencing low pain/pain free sex. i am in a bad period now but i have to be strong.
good luck xx

lauramw

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Re: My story - scared 21 year old

Post  Karen818 on Sun Dec 09, 2012 11:07 pm

I am in the same shoes as you, intimacy has become so depressing for me,every time my boyfriend wants to get a little intimate with me I start to get very stressed out and all I can think is how bad is the pain gonna be this time, there are times where I just let him do it because I feel bad but I cry silently from the pain.... It's awful and I have no one to talk to because none of my friends even know what this is, and I can't afford any doctors as I am a poor student, and don't have health insurance, I would talk to my mother but she doesn't know Im sexually active and I don't have that closeness with her to tell her :/ I'm miserable, so you are not alone I always feel that my boyfriend will eventually get sick of it and leave me as well :,( let's just hope this illness will go away or that the cure will come out in our lifetime!

Karen818

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Re: My story - scared 21 year old

Post  mary jane on Sat Oct 05, 2013 6:46 pm

Can you update us on your progress?
I'm in London as well, just got a referral to a specialist at the vulval disease clinic.
all the best
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mary jane

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Re: My story - scared 21 year old

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