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» Honey decreased my pain considerably!
Yesterday at 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Yesterday at 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

» Newbie and feeling helpless
Thu Jul 12, 2018 6:35 pm by emalita

» Using dilators
Tue Jul 10, 2018 12:27 am by srbry

» Hello. In Need of Advice, Please and Thank You. Long Read.
Sun Jul 08, 2018 3:58 am by cg1991

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: 1

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: 9

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: 0

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: 1

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: 5

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 …

Comments: 0

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


My journey so far...

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My journey so far...

Post  xlmc89x on Sat Mar 24, 2012 8:45 pm

My pain started fairly young. As I began to go through puberty and start my menstrual cycle, I struggled because unlike my peers, I found myself unable to wear tampons. Summers were difficult, embarassing, and frustrating. But it was nothing compared to the battle I face now as an adult.

When I became sexually active I had a difficult time because penetration was excrutiatingly painful–even manual penetraton causes that burning, painful, itching, scratching feeling that I felt when I tried to use tampons. And sex obviously was no picnic.

I lost my virginity at age 18 to a boy who was comprable in size to myself– 5’3 95lbs– the pain was noticeable but not crippling. Because he was not the most well-endowed, I was able to have sex even through the pain. Although I never found it particularly enjoyable, I was able to do it. But after a few months of a not-so-great relationship, we broke up and I met the love of my life, John. And four years later John and I are still together against all odds. We connect emotionally and intellectually and every day I feel like the luckiest woman alive. But our sex life is difficult.

In 2008 I first started looking for answers. A gynecologist tested me for Endemitriosis through an exploratory Laproscopy and found nothing. So I was quickly back to square one. After searching and a lot of confusion, I explored treatment options for Vaginismus–believing that to be my condition. I used dialators and other techniques and still was left no closer to finding relief.

In 2010 I began seeing a specialist at Boston Medical Center who told me that without a doubt I had Vestibulitis. He tested my blood to see what was going on with me and discovered that I have extremely low levels of testosterone. So for over a year I have been taking a topical testosterone gel and using a numbing solution to try to have a normal sex life. (yeah right!) I cannot take any form of oral contraceptive either to make sure that my body is not overpowered by estrogen.

A month ago I went in for another follow-up appointment and laid down the line. I am still in pain. It has been over a year and the testosterone is not helping me. His offer to me was to perform a Vestibulectomy where he would basically remove the inflammed tissue. But I don’t want surgery. Not if it’s not necessary. I feel like there are more answers out there waiting for me and that it is my responsibility to take charge of my own life and explore other options.

I need answers. There has to be some reason I have this. If I get the surgery, won't the tissue just grow back still inflammed if I don't deal with what is CAUSING the problem? I need to know more about this condition and I am interested in learning what worked for others in my situation

xlmc89x

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UPDATE

Post  xlmc89x on Thu Apr 19, 2012 8:42 pm

So, after my docotor (Ricardo Munnariz at Boston Medical Center) recommended the vestibulectomy I decided that instead of putting myself through that pain and time off of work I wanted to get a second opinion. So I made an appointment with the Women's Health Center at Harvard Vanguard in Burlington where Dr. Elizabeth Stewart works out of. My appointment was with Katherine Bell N.P. and I really liked her.

Thus far I've been taking Testim to build up my testosterone but my pain is still there and my drive hasn't increased either. But Dr. Bell did an exam and I held a mirror so I could see myself and she showed me that most of my skin was healthy except for a small area of inflammation. She prescribed Neurontin or Gabapentin at 100mgs increasing every 3 days till I hit 1000mgs where I will go in and reasses. She also wanted me to start physical therapy but unfortunately the wait list for that has me waiting until June so I am just going to work with dialators on my own. But she said the vestibulectomy surgery can often do more damage than good. And that it was unneccessary in my case.

Right now I feel like things are looking up and I'm really happy about it. I didn't want the surgery unless absolutely necessary and I'm so happy she didn't recommend that for me.

Anyone who lives in the New England area should seriously consider taking a trip to Burlington to see the Vulvovaginal Specialists there because they are amazing. I'll update with my progress!

xlmc89x

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