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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 …

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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 …

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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 …

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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


7 months since the diagnosis

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7 months since the diagnosis

Post  agtoronto on Tue Aug 14, 2018 11:43 pm

Hi everyone,

About 8 months ago, after going on antibiotics for a chest infection, I started to have signs and symptoms of a yeast infection. I don't get yeast infections often, but usually some over the counter antifungal cream helps to clear the infection. This time around however, I went for an Walgreens brand Miconazole 3 day therapy (higher strength drug) because I didn't want to deal with messy creams for 7 days. Man was that ever a terrible idea. An hour after inserting the cream I had THE worst vaginal burning/pain I have ever experienced. I tried washing myself and using ice packs, but the pain persisted. I went to the doctor and they diagnosed me as having bacterial vaginitis, gave me a prescription for metronidazole, and sent some swabs to the lab to rule out other infections. All my tests for infections came back negative and meanwhile I had some relief while on the metronidazole. After finishing the medication however, the discharge came back and so did the discomfort. I went back and received metrogel instead but nothing seemed to help. Some days its barely noticeable, others I feel like I can't sit down for more than 10 minutes at a time because of the pain and irritation. Its worse when I am stressed out, when I wear tight clothing, and when I eat spicy food (the pain will radiated into my thighs!).Since then I have seen another doctor who repeated all the vaginal culture and STD swabs, all still negative. She told me that the chronic pain I was having was likely vulvodynia. I haven't taken any medications for the pain since finding out about the diagnosis because I wanted to hold off unless it became unbearable. But I really don't know what else are options at this point. I can't use tampons anymore, if I wear a pad for too long I also get irritation, and sex is completely out of the picture. Has anyone else had a medication/antifungal chemical irritation that lead to the onset of their symptoms?

agtoronto

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Hi there!

Post  Gaby on Thu Aug 16, 2018 9:09 am

Hi Agtoronto,

My vulvodynia also started after several yeast infections. I've started with the non stop pain 6 months ago.
I've tried almost everything, i am currently on gabapantine cream 2 times per day. The first week of use it seemed to work (i even had painless sex!!) but maybe that was the placebo effect because now i have pain during sex and at this right moment i am sitting at my work place with an incredible pain!! Sad Sad .

I have also troubles with my urethra, every time after peeing i get an awful pain on my bladder, do you experience this too?

I am going back to the Gyne in the beginning of september, so i hope he can do something for me.
I am 34 years old an i am also trying to get pregnant, so this is really frustrating arghhh..

Hope you have better luck finding the correct treatment for you.

Greetz,
Gaby.

Gaby

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Re: 7 months since the diagnosis

Post  Macco on Wed Aug 22, 2018 6:52 am

Hi,

My vulvodynia pain started similar to both of yours. 10 months ago, I had a sore throat and was given antibiotics which gave me a yeast infection. I was diagnosed with a yeast infection and then a bacterial infection when the yeast infection medication did not help. I was tested for bacteria/STDs/yeast and it's all negative. I've used cream steroids, vaginal Valium, physical therapy, and gabapentin but nothing is working. I'm currently in a study for vulvodynia in which I'm receiving acupuncture but acupuncture is so painful! I'm so hopeless at this point. The pain is just becoming worse and I cannot have sex or use tampons anymore.

Thanks for listening,
Macco

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Macco

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Re: 7 months since the diagnosis

Post  flower74 on Fri Aug 24, 2018 12:32 pm

Hello Agtoronto,

My symptoms also started after taking Flagyl for 12 days. I went in for a routine pap smear in December 2017 and was called two weeks later and told I had BV and need to take anti-biotics. I had no symptoms of BV. There was nothing wrong with me at the time of the pap. Within 24 hours of taking the fist Flagyl I developed this unbearable burning in my vagina. To make an incredibly long story short here I am almost 9 months later with this on again off again vaginal burning. I never go more than a week without a flare-up. I've been tested for STDs, yeast, BV, UTIs multiple times and nothing ever comes back positive.

I feel like my life revolves around my vagina. I am absolutely convinced this is the result of some kind of chemical reaction/irritation that has created a chronic inflammation.

flower74

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Re: 7 months since the diagnosis

Post  Lovelyrey31 on Tue Aug 28, 2018 6:14 am

Miss agtoronto. I had the same situation. But my doctor diagnosed me chemical burn/injury.... Just stop anything u are using. Do u experience irritation during mens? Using lubricant which make u feel numb? It is on the skin injury from chemicals...

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Re: 7 months since the diagnosis

Post  flower74 on Wed Aug 29, 2018 11:17 am

Lovelyprey,

I was also told by one doctor if was a chemical burn. What are you doing to treat or manage your symptoms. How long were you told it would take to heal? It's been 9 months the and sometimes I feel like it's never going to get better.

flower74

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Very similar to my Story

Post  Grateful1 on Sat Sep 08, 2018 8:51 pm

Early summer 2016 I started having a burning sensation, similar to a bacterial infection. I had been prone to bacterial infections since having an IUD put in years before. I called my family doc and she called in a prescription for the bacterial infection. Fast forward a week and the symptoms are getting worse, not better. She does a swab and doesn't see any bacterial infection or yeast infection. She recommends I try something topical like Lotrimin and see if it helps. I do that-no help so right before July 4th, I got in to see my gynecologist. She swabs and says I now have a yeast infection and that maybe treating the bacterial infection (which I now think I never even had) kicked off the yeast infection. This cycle kept going-treating a yeast infection, then bacterial until eventually I tested positive with an infection called DIV-Desquamative Inflammatory Vaginitis-where the good bacteria has all been killed and nasty bacteria like Staph and Strep take over. Treated that for 4 long weeks, but the burning, itching pain and inability to sit comfortably was not improving. Gynecologist (Nurse Practitioner) still telling me that since i had a bad infection it would take time to get over it. Decided to have a 2nd opinion. Saw another Nurse Practitioner in Gynecology at a different hospital who specialized in Vulvar Pain. At our first meeting I told her my entire history, how many rounds of treatment I did for yeast, bacteria, then the DIV. She doesn't think I had any infection to start with. She thinks I had Vulvodynia from the beginning and then all the treating the infections caused the vulvodynia to get much worse, which caused my depression and anxiety to get worse, which made my vulvodynia more painful. Vicious cycle. She immediately put me on an antidepressant and started a topical steroid and increased my Gabapentin. That was in October. I also started seeing a holistic doctor in December who set me up with supplements and started accupunture. My gynecologist also added in low dose Naltrexone which has been shown to help with nerve pain in other medical conditions. So, I am writing to share my story, but also writing to give everyone hope. By March/April 2017 I was starting to feel better and was able to sit with less discomfort. By summer of 2017 I was feeling well enough to begin exercising again. I still (2 years after diagnosis) have some discomfort, but I would all it more of an irritation rather than the burning pain and no pain upon sitting. Exercise, especially when it's hot out, seems to be the thing that causes the most irritation. I am still on the anti depressant, low dose naltrexone and a topical Lidocain as needed. I no longer do accupuncture (very expensive!) but I think it played a big part of my stress reduction as well as doing mental health counseling at the same time. My goal is to try to manage my stress levels and keep this horrible condition from every coming back. It caused my severe depression and suicidal thoughts. I didn't think there was an end in site. So, if you are still suffering-please have hope. I think it just takes finding the right combination of medicines and stress relief.

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Re: 7 months since the diagnosis

Post  agtoronto on Mon Sep 10, 2018 4:11 am

Lovelyrey31 wrote:Miss agtoronto. I had the same situation. But my doctor diagnosed me chemical burn/injury.... Just stop anything u are using. Do u experience irritation during mens? Using lubricant which make u feel numb? It is on the skin injury from chemicals...

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I believe since all the tests were negative that the chemical burn is what lead to my continuing symptoms. And yes! I have irritation during my menses, its really irritating to just wear panty liners. I dont know when I will ever be able to use tampons again Sad

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Re: 7 months since the diagnosis

Post  agtoronto on Mon Sep 10, 2018 4:15 am

flower74 wrote:Hello Agtoronto,

My symptoms also started after taking Flagyl for 12 days.  I went in for a routine pap smear in December 2017 and was called two weeks later and told I had BV and need to take anti-biotics.  I had no symptoms of BV.  There was nothing wrong with me at the time of the pap.  Within 24 hours of taking the fist Flagyl I developed this unbearable burning in my vagina.  To make an incredibly long story short here I am almost 9 months later with this on again off again vaginal burning.  I never go more than a week without a flare-up.  I've been tested for STDs, yeast, BV, UTIs multiple times and nothing ever comes back positive.

I feel like my life revolves around my vagina.  I am absolutely convinced this is the result of some kind of chemical reaction/irritation that has created a chronic inflammation.  

Im so sorry to hear you have been going through the same thing. I too have on and off flare ups every week still, mostly during high stress times and always during my period. And I understand when you say that you feel like your life revolves around your vagina. Can't go swimming during menses because I can wear tampons and haven't even thought of dating in months just because I know there isnt even the possibility of intercourse anytime soon. Fingers crossed for you to feel better soon!

agtoronto

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Re: 7 months since the diagnosis

Post  agtoronto on Mon Sep 10, 2018 4:19 am

Macco wrote:Hi,

My  vulvodynia pain started similar to both of yours. 10 months ago, I had a sore throat and was given antibiotics which gave me a yeast infection. I was diagnosed with a yeast infection and then a bacterial infection when the yeast infection medication did not help. I was tested for bacteria/STDs/yeast and it's all negative. I've used cream steroids, vaginal Valium, physical therapy, and gabapentin but nothing is working. I'm currently in a study for vulvodynia in which I'm receiving acupuncture but acupuncture is so painful! I'm so hopeless at this point. The pain is just becoming worse and I cannot have sex or use tampons anymore.

Thanks for listening,
Macco

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Hi Macco,
Im so sorry to hear the struggle you have been going through. Sounds like you have tried quite a lot of different options. Nothing has helped too greatly for me either except for eating low sugar and trying to keep my stress levels down. I think seeing my naturopath has also helped me but I still continue to have pain and havent used a tampon in months. I hope that something works for you soon. Don't give up hope!

agtoronto

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Re: 7 months since the diagnosis

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