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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

Hello,

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


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....

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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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