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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 …

Comments: 8

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.

Comments: 1

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 …

Comments: 4

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 …

Comments: 0

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


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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