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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 7

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


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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