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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 …

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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

New Member, happy to see an active forum! My story..

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New Member, happy to see an active forum! My story..

Post  Jenn89 on Mon Aug 19, 2013 12:37 am

I haven't really done any research or looked into Vulvodynia much AT ALL since I was diagnosed with it almost 7 years ago. It's been such a long and frustrating thing for me to deal with, and I cry at almost all of my doctors appointments. At my last one, she thought it would be a good idea to see a counselor. I can't picture someone knowing nothing about my condition being able to help me, so I decided to go on a hunt for a site. I was pleased to see that this one seems to be pretty active.

As for my story, I don't remember ever having pain. I used to have trouble inserting tampons. I was finally able to insert one one day when I was about 16. When I went to take it out, it wouldn't come out and was extremely painful to tug on. I was at my boyfriend's (now ex) house at the time and I had to ask him to take me home. I had to tell him it was girl problems.
Then I get home and I have to talk to my Mom, who I don't really share information with anyway. Turns out, I needed to take a trip to the ER. Thank God I got there just before the last female doctor left. They had to give me a few shots of numbing medicine down there to soothe the pain. No Turns out my hymen was very thick and they referred me to see an OBGYN since I never had.
I saw my first doctor who referred me to another doctor, who referred me to another doctor, who referred me to another doctor and so on..... until finally one decided I would need surgery to have my hymen removed.
I believe my hymenectomy was in 2007.
After the surgery I remember being told to sit on ice packs, and that was very painful.
My doctors now think that the surgery was a trigger, but I was already genetically set up this way.

I've tried (I'll be making many spelling errors) lidocaine, halobetasol, compounded ointments, neurontin, an antidepressant, physical therapy, and I'm doing exercises at home. Nothing seems to help. I'm completely hopeless.
It's hard living as a 23 year old with this issue. It's not easy finding a man that will understand.
I ended up breaking things off with my then boyfriend for other reasons, but he was very understanding. And unfortunately I just found another guy who was EXTREMELY understanding, but things just didn't work out.

I guess I just need some uplifiting words and advice, but not lies. I hate when my friends try to say the right thing. They don't really understand. I appreciate their effort, but I guess I just need to talk to someone who's going through it.

Sorry it's so long. I hope some of you still take the time to read it. I really need some support!


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Age : 28
Location : Mass

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Re: New Member, happy to see an active forum! My story..

Post  Cat_in_Canada on Sun Aug 25, 2013 3:54 am

Hi Jenn,

Thanks for sharing your story. I understand how frustrating it can be to suffer from this condition. I've talked about my condition to two different psychiatrists. My current psychiatrist tries to be understanding, but I'm not sure if she really gets it. However, she is much better than the first psychiatrist I saw, who told me that my problem was that I was trying to have sex outside of marriage, and that once I was married and trying to get pregnant, everything would work out. I thought that was pretty unprofessional and offensive!

I have also had a tampon stuck inside me before. If anyone else has this problem, one thing to try before going to the ER is to drink a ton of water. For me, it is difficult for my muscles to remain tensed when I'm peeing, so that is how I got the tampon out! I don't know if that would work for everyone though.

It can be difficult to find a partner that is understanding, and I'm glad you have had some positive experiences. I think the most important thing in a relationship is to communicate what you are feeling, and to make sure that he understands that the problems you may be having with sex are due to your medical condition, not him.



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Re: New Member, happy to see an active forum! My story..

Post  tinkerbelle2 on Sat Oct 12, 2013 6:58 pm

Hi Jenn, I'm also quite new to this forum and delighted that people actually respond.

Sorry to hear you've had such a rough time. I'm 21 so not much younger than you, and it really is such an awful thing to go through. Things are stressful enough at our age.

How are things with you at the moment? I've tried most of the things that you have too and none have made any permanent improvements. Xx

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Re: New Member, happy to see an active forum! My story..

Post  Nelsonhs30 on Thu Oct 24, 2013 6:35 am

Jenn, my story is identical to yours! Also had the hymenectomy which probably triggered my vulvodynia. Hang in there! Something will work! I'm currently on gabapentin 1000mg and still waiting. Have you taking of surgery? It may be our best option, especially if nothing else was working for you. Stay strong! Personal message me if you ever wanna talk!!


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Re: New Member, happy to see an active forum! My story..

Post  mary jane on Thu Oct 24, 2013 8:22 pm

Jenn, what are your symptoms ?
So sorry to hear you have this, I know what it's like , I'm 26 and feels like I will die alone and in pain
mary jane

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Re: New Member, happy to see an active forum! My story..

Post  Jenn89 on Wed Aug 27, 2014 12:02 am

Wow. I feel like a horrible person! I was so excited to find a forum that was active.. Then i became inactive. I recently hit a milestone though so I thought of this forum and told myself I needed to catch up! Things are still pretty painful. Even everyday things like driving in the car or sitting in a chair get me. The dating thing is still rough. But i have to say, every person that I was saying & told, was so understanding. It's crazy. I've been so lucky! As for my milestone, well, I finally had intercourse for the first time at age 24.
It hurt.
We used lots of lube, it wasn't so bad going in, but he said I was so tense I was pushing him back out. So I had to remind myself to relax and took deep breaths. Every time he would "flex" I would feel tons of pain! So he tried to hold back on that. He coached me through it. Finally after only about 3-5 minutes I told him I had to stop. He pulled out and I just laid there. As I laid there I felt the blood leaving my face and I started to see stars. I was about to pass out. Ugh. I don't know if it was the anxiety, the pain, or both, but it was rough.
I think if I practice more, it'll get better.


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Re: New Member, happy to see an active forum! My story..

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