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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, …

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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 …

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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 …

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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 …

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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 and cure

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My story and cure

Post  Irish_Girl on Sun Feb 09, 2014 8:56 pm

Hi everyone, I really sympathise with everyone going through the various stages of Vulvodynia, believe me I know how you feel! I thought I'd share my story so that readers know there is hope and that finding a cure is possible, despite how hopeless the situation can seem. I'm going to try and be quite descriptive with my symptoms, as I found reading others descriptions when I realised I had the condition helped me diagnose my symptoms fully, and aid the cure process.

I'm from Dublin in Ireland and have been pain free for almost three years. I'm 26, and I first started seeing symptoms when I was 22, and the pain began as a result of what I thought was a yeast infection (I'm prone to getting them). The pain was sharp, throbbing and consistent in one specific area (just outside the entrance to the vagina, and I also experienced some internal pain as well), I had never been sexually active so the pain wasn't caused from anything like that, but there was also some external symptoms in the form of swelling (but no itchiness). The pain was unprovoked, though if pressure was applied to that particular area, it would also become more intense.

Long story short, I saw several GPs for about two months, and all prescribed me with the same topical creams and antibiotics one would use to treat a yeast or bacterial infection, and nothing worked. The pain remained the same day in, day out and I slowly sunk into depression and started to spend all say in bed, refusing to eat etc,, I was in a bad way. It's worth noting here that I've had Mild Cerebral Palsy, my whole life, though my physiotherapist couldn't find anything to tie up the two. My pelvic muscles are also in really good shape (so I'm told!), so doing this form of excersize didn't help me in any way either. I eventually went to a swiftcare health clinic when I couldn't take any more, and they found an ulcer which, despite careful self - examination and visiting quite a few GPs, we all seemed to miss! I was then referred to a Gyn who did a few tests, and as soon as I mentioned my symptoms, he told me about Vulvodynia.

Unfortunately, he doesn't practice anymore, but it can't tell you how much it helped that right from the get go, he was so supportive of me. I went under general anaesthetic twice so that he could take a closer look at things (I can only stretch so far when awake due to the CP), and he did a biopsy and not only removed the huge ulcer, but discovered that this had pretty much been blocking the entire entrance to the vagina, causing blockages of discharge etc.. I found it odd that I didn't notice the ulcer, but because of my narrowness and the fact that the ulcer was difficult to see, he said I never would have been able to myself. Anyway, you can imagine my happiness that there was a reason for my sharp, throbbing external pain, but even after the ulcer was gone (and it took about 6 weeks for the stitches to heal, which was very painful in itself), the internal pain remained.

I began to get depressed again, because it was the daily, internal pain that bothered me the most. In tears, I returned to my gyn and we decided that he should take a look internally as well. When I went under again, my gyn concluded that the entire area (internally and externally), was hyper-sensitive, thus causing the internal nerve pain. So he prescribed me a six month dose of Gabapentin - 350mg, 3 times a day. During this time, I did all the usual things like only wearing loose fitting clothes and cotton underwear, and avoiding perfumed products and I didn't even think about sex - I couldn't until the pain was resolved. What helped me was the reassurance of my gyn: "if this doesn't work," he said, "we'll keep going until we find something that does." So, girls if you're not happy with your gyn, try looking for another who'll offer more support. And after about 6 months on the tablets three times a day, the pain stopped as quickly as it had started and I haven't had to take a tablet since, and that was three years ago. I do think my pain was amplified due to the fact that I couldn't focus on anything else (and how are you meant to stop this because of where the pain is?!), but I knew I had to try, so I stopped reading about the pain etc and as I continued to take the tablets and felt the pain lesson, I decided to try and change my outlook and think positively about my pain: I was going to defeat this, it was not going to consume me anymore, the way it had for over 18 months. And I took more tablets and after two years, the pain was just not there anymore and I weened off the pills.

It was a long, painful and stressful journey, but I found my cure, despite all the hard work and tears in between. Even to this day, I'm conscious that the pain could rear it's ugly head at any time, so I always try and keep a prescription on standby in case I need to start a dose of them again. I'm not hugely sexually active by any means as a result of all this (I'm conscious that given my history, sexual activity will trigger the internal pain so I approach this side of things a little warily than I might have if this hadn't happened unfortunately), but when I did attempt it when the Vulvodynia pain subsided, it wasn't hugely uncomfortable at all (it was for other reasons, but this had nothing to do with my Vulvodynia pain), and now it's (thankfully) virtually pain free - yay! Sorry about the length, but I hope this will encourage others to keep looking for a solution and know that it is possible for the pain to subside and for your normal life to resume again. I wasn't prepared to give my life up to this pain, I was going to find a cure, and if it ever starts up again ( as I'm fully aware it might), I'll find one again.

Good luck everyone, I know it's tough, but keep trying to get through it xxxxxx

Irish_Girl

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Re: My story and cure

Post  mary jane on Sun Feb 09, 2014 9:56 pm

THANK YOU FOR POSTING THIS STORY. GOD BLESS YOU AND ALL THERE IS, I am also on 50 mg amitriptyline and it works for my nerve pain, I am positive if I add more meds I will be able to live a better life

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Re: My story and cure

Post  Irish_Girl on Sun Feb 09, 2014 11:00 pm

Thanks Mary Jane, I hope it works for you. It's very much trial and error when it comes to defeating Vulvodynia, and about finding a combination that works for you. The problem I had with this was the pain that your left in up to this point! I know just how awful it can be and reading stories that had positive outcomes helped me to stay sane and gave me hope during the worst of days. This forum is fantastic; having support like this is so vital. Before I found my gyn, I was very much coping with it alone, which was one of the toughest parts.

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my vulvodynia experience...

Post  Gemini23 on Tue Jun 10, 2014 6:20 am

hey so I am new here and very confused by this site! I don't think I even posted this correctly...sorry if I put it in the wrong spot! I'm not computer savy.... So I started developing vulvodynia as a teen in highschool and I'm now 25 yrs old. at first it was only one side of my vestibule that I experienced the burning pain in and it would come and go. Usually it only lasted a few hours and was mainly in the left side of my vestibule. It would also be accompanied by a thick yellow discharge that was nearly impossible to get out of my undies. these symptoms would come n go frequently and I never told anyone about them. then as highschool progressed so did my pain. now my whole vestibule hurt everyday and the pain free intervals just got shorter and shorter. the yellow discharge became an everyday thing too. I saw one obgyn after another & none of them knew what was wrong with my vagina. they tested me for yeast, b.v., and every std you can think of but nothing ever came back positive. (I started having sex after I developed the vestibulitis & yellow discharge btw) I also saw a primary care doc & even a chiropractor & a urologist. no one knew what was wrong with me though. finally an obgyn referred me to a specialist (vulvologist I believe..) who diagnosed me with provoked vulvodynia. I tried a lot of the antidepressants and also the topical lidocaine cream but none of that stuff worked. I also went through nearly a year of physical therapy, which helped but didn't cure me by any means. topical steroid cream that my doc gave me to help with the psoriasis I had around my vagina helps a lot for the vvs pain. I am over taking dangerous prescription pills to treat this so at this point I am looking to just heal my body the natural way. I am not sure what caused my vulvodynia but I think it started when I was 16 or 15. I never had trouble with yeast that I can recall, but I won't rule it out completely. Diet always plays a role in disease and disorder in the body. I think poor diet, severe chronic insomnia and severe chronic stress had a lot to do with the onset of this illness for me. I have also had fibromyalgia for quite some time now as well. I almost feel like my vulvodynia is just a symptom of my fibromyalgia. they both started at the same time I think. I believe this also all has to do with inflammation in the body. when I was on prednisone after I got my wisdom teeth removed, my vulvodynia and fibro were not as bad as usual, so it's clearly inflammation related just like the psoriasis patch around my vagina and other parts of me.

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