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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

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Feeling hopeless

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Feeling hopeless

Post  Delilah1 on Mon May 13, 2013 4:05 pm

Hello Ladies. I'm feeling kind of hopeless today. I visit the forum everyday in hopes of reading someone's story of feeling good again. Does this ever go away? Is there anyone out there who developed secondary vulvodynia and now feels healthy and pain free again? If I ever feel "normal" again I will not forget to come back to this forum and share my story. Thanks for listening!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Mon May 13, 2013 5:16 pm

I had provoked vestibulodynia and I will tell you that I am considered cured and feeling awesome! It took a while to find the doctor that worked for me, a lot of them thought it was in my head, but it wasn't as you well know. This past October I found a doctor in South Florida that was able to see where the pain was and better yet to show me. He told me I had 3 options and that he wanted to work from cheapest to most expensive. The 3 options were: 1. a compounded cream of amitryptaline, gabapentin and lidocaine (sorry if these are spelled wrong) 2. physical therapy (I was already participating in it) and 3. Surgery known as a vestibulectomy. I tired the first two and they worked for about 6 weeks and than the pain came back. While I was being treated for this he discovered I had strep which I was also treated for with antibiotics (and as far as I know that's gone). After 6 weeks went by, the pain came back I was so depressed because I didn't think I could be cured. Finally, I went back in and he said that I needed to do the surgery. You can imagine how much trepedition I felt when I heard that. I had to schedule it in December because I had stuff to do with work and personal trips that had already been paid for. December 5th was my surgery date you have no idea how bad I flipped out right before, but all I can tell you is that it certainly wasn't as bad as I thought and I am SO HAPPY I did it. The recovery was 6 weeks, and mixed emotions because you feel what feels like vulvodynia, except its just the nerves reknitting it was beyond scary! But at my 6 week mark (actually 2 days before!) he did the dreaded qtip test AND put a finger up in there and there was ABSOLUTELY NO pain!!! I sometimes get a little uncomfortablness on my right side but it's very managable and usually due to muscle spasm. I don't know if you're a candidate for surgery, but the reason I am telling you this is because there IS proof of making a recovery, I am proof of that. Make sure to find a doctor who is well known in vulvodynia. I typed "vulvodynia specailists in South Florida" into google, and my doctors name came up. I am so thankful everyday that I found him beacuse he truly saved my life. Everyday was in pain, my lunch breaks were in the shower, I was depressed and moping and finally found a "cure" or at least no more pain. Take a deep breath and start your search, it takes times and patience, and make sure to go over everything with your doc so that you make sure you are both on the same page. Nothing is more frustrating than when you think you understand something and realize later it wasn't what you really thought. Been there done that ugh! I would say I'm about 98% better Smile I will tell you though that I do work with a dilator (actually my vibrator) and I still see my physical therapist but only every other week now and sometimes I can do every 2 weeks depending, but it was well worth it!

Alana3

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Re: Feeling hopeless

Post  Delilah1 on Mon May 13, 2013 6:06 pm

Thank you for your reply Alana! It's so good to hear a success story! I am so happy that you found relief from this horrible condition. When did your V start? Were you ever able to use tampons, have exams or pain free sex? All this started out of the blue one day for me. Sex, exams and tampons have always been comfortable until now. I do have an appointment with a vulvar specialist at the end of June. It was a 3 month wait for an appointment! I am happy for you! Thank you for sharing your success on this forum!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Mon May 13, 2013 6:29 pm

Who's your specialist? Yeah, I could have sex comfortably but not exams or tampons, than one day sex got bad and it continued to get bad and NO one could tell me what was wrong, it was horrible Sad Where are you from?

Alana3

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Re: Feeling hopeless

Post  Delilah1 on Tue May 14, 2013 12:13 am

I am from St. Louis, Mo. I'm going to the Vulvar and Vaginal Disorders Specialty Center in St. Louis.
It's been a long wait!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Tue May 14, 2013 1:19 am

It'll be worth it

Alana3

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Re: Feeling hopeless

Post  ellie12 on Sat May 18, 2013 4:08 pm

I have found ways of managing my secondary vulvodynia using Lidocaine which is a topical anaesthetic. Ask your specialist about it because after months of using it I was finally able to start having sex with my partner again.

ellie12

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It gets better

Post  Rainy Day on Tue May 21, 2013 8:59 pm

Yes, you will learn how to manage your condition and resume a somewhat 'normal' life. I was a 10 in pain in the first 9 months probably. Once I learned my triggers, what meds work, what therapy works, I am a 1 in pain most days...unless I flare. But, I am learning to control my flares now too. It gets better, but it takes a long time to figure it out!

Rainy Day

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Re: Feeling hopeless

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