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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 …

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: 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 …

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

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


My story- a long road to recovery.

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My story- a long road to recovery.

Post  jen007 on Mon Nov 19, 2012 2:14 pm

Hi Ladies!
I've been on the forum for a few weeks and I figured it was my turn to tell my story.

I've had vulvodynia for about 5 years now. It all started when I had tried to have sex. The pain was so unbearable...the only way for me to properly describe it is a sharp pain....like a hot knife made of sand paper was inserted into my vagina. Every time we had tried to have sex I'd have to run to the bathroom and take a warm bath to try to sooth the pain. This pain kept me from fully giving myself to my long term boyfriend. At the time I just thought I was too chicken to have sex, since I knew that sex was supposed to hurt the first time. After we tried with no success I'd cry...every time. I didn't understand why I couldn't just suck up the pain and get the first time over with. After trying about 5 times I started thinking this pain that I was feeling couldn't be normal. If sex had hurt that bad at first I don't think anyone would ever do it. So finally I scheduled an appointment with a local gyno. She checked me and told me there was nothing wrong, that I was healthy down there. I had explained to her that I had been having chronic yeast infections. I mean I had them ALL the time... and they were so painful. She then took a swab of the inside of my vagina, which felt just as painful as me trying to have sex, to test me for bacteria. She called me a few days later saying I had a regular yeast infection, but since I was experiencing pain she gave me a stronger antibiotic. BIG MISTAKE. After a few weeks of this doctors antibiotic I went on to finding another doctor since the other ones treatments never worked. I found a good womens internal specialist in a local hospital. After giving her my records from the last doctor she saw the medication I was prescribed. She explained to me that the antibiotic was for Mensa...a form of staff infection...something that would never have help me with the symptoms I was experiencing. I was so mad.

After all that the internal specialist helped me a lot. She wasn't sure, but she told me she thought I had vulvodynia. When she explained what it was to me it made sense for how I was feeling. I was relieved that I had a diagnosis, but so completely depressed about the entire situation. She put me on topical and oral gabapentin. It didn't really do much for me...so I had to try to find another doctor. So at this point its been 3 years, 2 doctors, and no proper diagnosis. I kept trying, for about a year, to find a new specialist in this area. I couldn't find anyone near me that specialized in vulvodynia. Finally I was suggested by a family member to call another local hospital. Since I had a little luck at one maybe I'll have more in another. So I called and out of pure chance they had a specialist. The hospital had a maternity center and gyno in one. They had 2 specialists who specialize in vulvodynia. I made an appointment right away an began different treatments. She had put me on amitriptyline and another compund cream along with 5% lidocaine cream. Nothing helped much. The amitriptyline helped a little once I got to a higher dose, but for some reason it made me loose about 10 pounds. Before taking the amitriptyline I was 120 pounds...After I was about 105 106 pounds and have continued to stay at that weight. My doctor told me if anything I should've gained weight, but it had an opposite affect on me.

After none of her treatments worked she talked to me about surgery. It was a last resort kind of thing. I had nothing left to do at that point. I could've done pelvic floor therapy, but my doctor told me that in the long run it would probably not help me. Now we were on the search for a proper surgeon. There was one in the hospital that had examined me, but he hadn't done enough surgeries and didn't feel comfortable operating on me. I had done so research online and found a book When Sex Hurts by doctor Andrew Goldstein. After reading it I knew I wanted him to be the one to do it. I brought the book to my current doctor and she said she'd try, but he's a hard guy to get a hold of. Somehow..again by chance...she went to a vulvodynia seminar and doctor Andrew Goldstein was the head speaker. She spoke to him after and he gave me a recommendation! After a few weeks I went in for an examination. He told me that I have PVD... Provoked Vestibuledynia. He said it was very localized and that a full vestibulectomy should fix me right up. So I scheduled the surgery. (I did a lot of research on the topic of surgery and found it was the best option for me.).

I had my surgery on July 6, 2012 at 10 am. Its now been 4 months and I've been feeling minimal pain. I still have a sore spot or two, but nothing like it used to be. Plus I was finally able to have sex! It wasn't pain free, but it will get better over time I'm sure. I'm still not fully healed yet...It take about 8 months to a year to be fully healed from surgery. So was the vestibulectomy a success? So far, yes it has! I have one painful area, but with dilators It should subdue.

If anyone has questions about anything please do ask! Also If anyone want details about the surgery and recovery I'd be happy to tell!

-Jen


Last edited by jen007 on Mon Nov 19, 2012 2:15 pm; edited 1 time in total (Reason for editing : spelling)

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

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