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» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

» Recovery story please read !!
Fri Feb 01, 2019 1:33 pm by mary jane

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 7

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

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 …

Comments: 3


Desperate for help - Need some support with this condition - driving myself mad!

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Desperate for help - Need some support with this condition - driving myself mad!

Post  JS007 on Tue Dec 15, 2015 1:53 pm

Hi, I am really keen to see if anyone can help me or give me some comfort!! I have finally been diagnosed with Vulvodynia after 5 months and have been put on Amitriptyline by the gyneo - at least she new about the condition when all the swabs came back negative!!! My trigger appears to be when I go to the toilet, after I have been for a wee or a BM the whole area starts kicking off!!! I feel like I have nappy rash and issues near the opening to urethra? Has anyone else experienced this??? I don't know what to do, such a normal function is becoming a nightmare for me...I just want to feel normal again?! I am on 40mg of A and have been told to increase gradually - does anyone know what the right dosage should be??
I am very anxious and have sadly been depressed over worrying what all of this is about - I just want it to stop and not be in discomfort everyday either waiting or going to the toilet! thanks Smile

JS007

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Re: Desperate for help - Need some support with this condition - driving myself mad!

Post  PainBlogger on Tue Dec 15, 2015 3:45 pm

My main trigger is emptying my bladder (and sometimes emptying my bowels triggers the urethral irritation also). Not only do I often get pain, my bladder doesn't empty very well and it takes ages. I always try to make sure I drink loads of water and/or herbal (non-fruit) tea so that when I do go, there is always plenty to flush through and it's more dilute. Have you tried rinsing with cool water after emptying? Have you cut out all possible triggers for bladder and urethral irritation (such as caffeine, fizzy drinks, citrus fruit juices, acid foods like vinegar, artificial sweeteners, alcohol, and even decaf tea and coffee)? Some people find a low oxalate diet helps. Also sitting in a bath (or portable bidet - you can get these on Amazon and they sit on the toilet so you don't have to fill a bath) with sodium bicarb/baking soda or Epsom salts can help. My doctor told me to use Oilatum bath emollient in the bathwater - I get the kids one as it is fragrance free - again, 600ml bottle from Amazon works out cheapest.

As far as the right dosage of amitriptyline - it depends on the doctor and on how you get on with it. Anything from 10mg/day to 75mg/day is quite common for pain. My doctor wanted me to go up to 50mg but I had to stop it at 30mg/day as I got palpitations (but I'm on various other drugs that make side effects more likely). Ideally, you want to be on the highest reasonable dose that you can tolerate but the lowest dose that helps - if that makes sense.

PainBlogger

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Re: Desperate for help - Need some support with this condition - driving myself mad!

Post  sarisbaris on Thu Dec 31, 2015 6:18 am

Please read my post in the 'vulvodynia info' forum titled 'cured from vulvodynia...' My trigger was different and when it flared last I was pregnant so the docs couldn't give me much because it would harm the baby. This forced me to keep looking for an alternative doc who finally fixed it. I've been pain free ever since and was able to give birth to my son without complications. I'm so sorry you're going through this. Please read my post.

sarisbaris

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Re: Desperate for help - Need some support with this condition - driving myself mad!

Post  sarisbaris on Thu Dec 31, 2015 6:19 am

Although I did have constant urinary tract infections along with the vulvodynia that she fixed as well. FML. I've been pain free since then. Let me know if you have any questions.

sarisbaris

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Re: Desperate for help - Need some support with this condition - driving myself mad!

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