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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

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 …

Comments: 1

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: 6

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


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??



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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


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Re: My story - scared 21 year old

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


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


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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!


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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
mary jane

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Re: My story - scared 21 year old

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