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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 …

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


Never had un-painful sex

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Never had un-painful sex

Post  cba321 on Sat Jul 14, 2012 7:06 am

I guess I first suspected something was wrong when I was around 15 and tried to use a tampon...there was absolutely no way it was going in, and to this day I don't wear tampons.

My first experience with sex was when I was 19. It was very unpleasant and his penis maybe went in 2 cm. After a while I could finally let him come into me completely but was still unpleasant to say the least, awful actually, most of the time I would have to stop and a lot of the time I couldn't cope with the pain and would bring me to tears. It felt like something was tearing and ripping the skin. I went to the GP, to which she told me I was anxious about sex and that was causing me to tense up and cause the pain. I didn't really agree with this but what else could I say, I was inexperienced. I continued to have painful sex for at least a year, then I went back to the doctor who then sent me to a gyno. The gyno was so irrelevant, his final conclusions after seeing me for approximately 20 minutes over two session was that I had an anxiety disorder and that I would have trouble conceiving children in the future??? I nearly collapsed when I left the office. Luckily for me my partner was understanding and helped me somewhat with the condition until we broke up, mostly for other reasons than vulvadynia, but it didn't help, but would have happened anyway. During this time I tried Endep (antidepressant), low oxalate diet, antibiotics and huge amounts of anti fungal tablets - it did nothing at all

I then started seeing Marek Jantos from a google search. I did the biofeedback for a few months I think, it did help to minimise my emotional reaction to the pain and let me relax somewhat despite the pain, but I could not maintain the relaxed muscle. I stopped seeing him due to how expensive it was and limited changes and plateau of change

I then went to another GP who sent me to a gyno in Burwood NSW Australia, Dr. Ann Prys Davies, who was amazing and suggested I try Botox, being at university, poor and single I ended up not going down that pathway at the time. No one else knew of my diagnosis and my family being very religious was also not somewhere I could turn...therefore I blocked it all out, I "forgot" about vulvadynia, relationships and sex for about three years....I don't think I could bear to think about any of it, so I pretended it didn't exist.

I started seeing a guy late last year (2011) and realised that I just could not cope with telling him, things faded between us and he disappeared. It was the awakening I needed I guess, I made an appointment to see Dr. Ann Prys Davies again, I cried the entire appointment, I felt so sorry for her, she was on the receiving end of 3 years of pent up anguish. She suggested I see Sherin Jarvis a physiotherapist at the women health and research institute. An appointment that I think may change my life. She was amazing and knowledgeable. I have always had digestive issues and for the first time someone finally knew about the link. I had suggested it to a dr as I believed the pain was caused by a tight muscle that goes between both the bowel and vagina opening, he laughed at me...I was right though Smile I have meet with Professor Thierry Vancaillie who will be doing Botox treatment. I cried in front of both of them as well...they were very understanding. I also saw the psychologist there for three sessions, but it wasn't for me and I don't think it would have helped me with anticipatory pain, and is something I could practice myself as I have already done sessions with Marek Jantos about relaxing despite the pain as it does decrease the pain somewhat.

At the moment I am 2 weeks away from getting a botox treatment...I am scared but I am happy that I have been able to face my fears and try something even though it may not work or work enough...I have seen the thread about Botox and will add how this goes in 2 weeks time...



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Re: Never had un-painful sex

Post  abcdefg on Sun Jan 13, 2013 8:00 am

I have had the "it's all in your head" lecture as well. I've been told it's because I'm too stressed, despite my telling my gyno that I'm a fairly laid-back person. I have never had sex during which I did not tear up from the horrible burning pain. I decided that I was just pathetic and kept trying to have sex in hopes that it would get better. It did not. I was placed on amitriptaline for my migraines, and that has actually helped some of the pain. I am also using the dilator method, which I have hope for. I'm not supposed to have sex until I can use them with no pain. I hope that the botox works for you! I know how stressful the condition can be!!

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Re: Never had un-painful sex

Post  cba321 on Sun Jan 13, 2013 10:46 am

Very sad that a lot of people have the "it's all in your head" lecture.I think it would be more helpful if health professional just said, we don't know what the cause is. Even if it was all in our heads, which it isn't, health professionals should be pointing us towards psychological help! Not just palming us off...very sad indeed no matter how you look at it.

The botox has been helping a lot. I had sex for the first time in while and the pain was significantly diminished, i was blown away. HOWEVER...the botox is still working in my system, and should do for another month. I have been stretching and using dialators and HOPEFULLY even when the botox is gone the muscle will remain stretchec. I have also started with a chiro and had my first session of remedial massage, specifically myofascial massage so see how that goes. In my case it is not just the pelvic floor muscles it is all the muscles involved in stabilising the pelvis that are tight

All the best with your journey!! Smile

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Re: Never had un-painful sex

Post  Alana3 on Mon Jan 14, 2013 6:25 pm

Hey,



Does the botox hurt when they do it? I am maybe heading in that direction, I had a vestibulectomy, but my muscles are totally ridiculous and they are really spasmed. This is all over my body not just the hooha, but I might be headed in that direction. What's it like?

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Re: Never had un-painful sex

Post  cba321 on Tue Jan 15, 2013 7:30 am

Hi alana,

I went under general anaesthetic, had to apparently to ensure i dont move. It hurt for a day or two but then went away. Took about 5 days to start working. It was very weird for a number of weeks, felt like mypelvis was bouncing around everywhere! But after a while that went away. I had to do daily stretches with a dialator im up to 45 mins every day with the largest dialator. Hope fully that will stretch out the muscle permanently

I should change the name of my post as i had sex a few days ago (been a long while) and it wasnt painful wasnt that pleasurable either but ill take it as a win! First time. There was discomfort but definitely bearable! All thanks to botox! However, see if that lasts after the botox has gone....

cba321

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Re: Never had un-painful sex

Post  Alana3 on Wed Jan 16, 2013 5:15 pm

Yeah, I don't think so. They like rape you in your sleep with dilators not cool. Plus the side effects freak me out. I don't want to be knocked out again, as I don't handle the anesthesia well. Do you think its worth it?

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Re: Never had un-painful sex

Post  cba321 on Thu Jan 17, 2013 9:31 am

Yeah definitely not nice going under. My doctor does it under general but i have heard others say that they didnt. It was for me but really does depend on each person

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Re: Never had un-painful sex

Post  Alana3 on Thu Jan 17, 2013 1:58 pm

I just had a vestibulectomy, I do not want to go under again! haha I'm working on strecthing and breathing exercises, and it's been a little better everyday, so hopefully I won't have to do botox, I just don't want poison in my vagina lol

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Re: Never had un-painful sex

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