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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6


New w/ Secondary Provoked Vestibuldynia

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New w/ Secondary Provoked Vestibuldynia

Post  Birdy on Wed Apr 26, 2017 11:46 pm

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 infection, which was treated with Diflucan, I haven't been normal.

The skin around my vaginal opening (the vestibule) and an additional thin strip going up to my clitoris have been red ever since.  I don't have constant pain, only when provoked and usually only during intercourse.  I can insert small things like tampons just fine because they don't really come in contact with the vestibule skin in question.  Any prolonged contact, however, sets it on fire.  The harder and longer the contact the worst the burn and the longer it takes to go away.

My gyno had me start using lidocaine, which I had mixed results with.  Sometimes it just made the burning worse.  I'm thinking about trying nightly treatments instead of the only with sex method.  She also put me on an estrogen cream.  I don't feel like it has done anything.  I started doing acupuncture, but I can't tell if it has helped.  There were maybe four times in the last two months where I had pain free sex (for reference I usually have sex 3-4 times a week, even with this issue), so I figured maybe things were on the upswing.

However, I recently had a huge setback. I got another yeast infection last week thanks to having to be on prednisone for nine days after having a severe allergic reaction to an unknown cause (possibly a glass of sparkling red wine I'd never had before).  The yeast infection was worse than last time and I'm scared it has damaged the already messed up skin further.  If I press down on the previously red skin right now I can provoke pretty significant pain that I was not able to before unless I had sex recently (which I haven't because my boyfriend has been traveling for several weeks).  I am praying it will lessen as I get further away from the yeast infection.

So essentially I have red vestibule skin on either side of the vaginal opening extending to the clitoral area accompanied by moderate to severe burning pain (particularly in the vaginal entrance, aka the area which gets the most contact) after sex.   I only wear cotton underwear, have switched laundry soaps to Nellie's All Natural, and am in the process of switching to all natural hand and body soaps.  I take a Femdopholis probiotic daily.

I had a wonderful life before this happened.  Literally no vaginal/vulval problems to speak of.  My sex life was amazing.  Now, I feel like I am cursed.  I feel like I have read so few stories of cures or people becoming permanently pain free.  I am in disbelief that I could go my whole life and have nothing wrong with me... only to have repeated infections and now this in only six months.  I want to be normal again so badly.  I have no idea what this was caused by.  Pelvic floor muscles?  Dermatitis?  Nerves firing for no reason?  Should I be doing physical therapy even though it doesn't seem to be related to my muscles?  Is it possibly nerves even though it's only provoked pain?  Any advice or words of support would be much appreciated.

Birdy

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Re: New w/ Secondary Provoked Vestibuldynia

Post  Hatty on Fri Apr 28, 2017 2:25 pm

Have u tried Gabapentine?

Hatty

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Re: New w/ Secondary Provoked Vestibuldynia

Post  StellaLuna on Sat Apr 29, 2017 1:37 pm

Your story reminds me a lot mine. My problems started because of a yeast infection. From my experience try not to apply anything to the area because it will make it worst. Also try not to take any antibiotics exept it is really necessery. Doctors seems to give antibiotics for no reason. I think that the only thing that really helped me is amitriplyline which is an antidepressant.

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Don't worry :)

Post  Ilya on Wed Aug 09, 2017 11:52 pm

I suggest you read this book "When sex hurts:A Woman's Guide to Banishing Sexual Pain" by Andrew Goldstein. It has all the information you need to know about your condition. It is very well written and easy to understand. I myself am reading it right now and am in the middle of the book. I found it very helpful to have more information. Before I read this book I was so confused and scared. Now that I know all about the causes, types and treatments of PVD I feel I can manage to treat mine.

I hope it helps you the same way as it helped me.

About the lidocaine I guess it's fine that it stings a little bit at the beginning. I think I read in this book (or somewhere online) that it stings a little bit at the beginning before the area is fully numb. Also my gynecologist asked me to apply it twice a day (one in the morning one at night) no matter if I am having sex or not. And of course 10 minutes before sex as well. It was also mentioned in the book that there are some studies shown that frequently applying lidocaine shows improve in the sensitivity of the area.

If you read the book you yourself will know what specific type of vulvodynia you have and you will see the treatment for it right there in the same chapter.

Hope you will feel better soon and be pain free. <3

Ilya

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I think I'm cured!

Post  Birdy on Sun Oct 22, 2017 3:47 am

Hi everyone,

I swore if I was ever cured I'd come back and update, since so few people remember to.

Since April (when I first posted) a whole lot has changed.  I started doing pelvic floor therapy, got off synthetic estrogen, and discovered I have a new sensitivity to my partner's pubic hair.  I have no idea if one of those things alone would have changed things for me, but I've been pain free since July.  As long as I maintain good pelvic floor strength and my partner stays trimmed, I don't have any problems.

While I'm dealing with new problems now (extensive hair loss from going off combination birth control/using the Mirena), at least I no long have vulvar pain! I was so hopeless for so long that I never imagined I'd be where I am now.

I hope my story gives someone hope Smile.

Birdy

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Re: New w/ Secondary Provoked Vestibuldynia

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