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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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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: 9

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 …

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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 …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


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

New member from US

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New member from US

Post  coralburn on Fri Mar 18, 2011 1:28 am

Hey everyone! I'm new here. I'm 21 and I've had vulvodynia for my entire life, but I was just diagnosed a few months ago (despite suffering through numerous gynecological exams from doctors who seemed more annoyed with my pain than anything, but that's a subject for another post). I've been treating it with lidocaine gel and with NSAIDS. Neither method works very well, but they definitely help, and I'm optimistic that I'll find a solution in the future.

I have fairly bad vulvodynia pain, though. Vaginal penetration is completely unthinkable for me right now, and being touched sexually is usually hard for me to handle (even on days where I use lidocaine and take NSAIDS and tylenol). I've never had a full pelvic exam because of my pain, and I've had to be sedated for minor procedures such as lynching cysts. The only thing that ever completely helped my pain was taking hydrocodone at the ER, but obviously that's not a good long-term solution... I also have chronic joint pain and chronic migraines, so I'm really sick of being in pain at this point.

Before I was diagnosed, I didn't even know that vulvodynia existed, so I'm pretty pumped that this forum is active! Very Happy

PS: I'm starting a blog about having a healthy sexuality for people who can't have intercourse and people with vulvodynia. It's pretty new, but feel free to check it out: http://sexwithoutpiv.blogspot.com/ (NSFW)


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Re: New member from US

Post  Mouse on Fri Mar 18, 2011 1:52 am

Hi Coral,

Welcome! What a great blog. I never knew what PIV was!

I posted an article on here a few weeks back about outercourse, it's a much better way for girls anyway.

What are doing to heal your V? The usual stuff we talk about it is PT, meds (if you can tolerate them), therapy - that's a must, this is crazy stuff to deal with every day, good support, staying social (very tricky when you feel like cak), being kind to yourself, diet, exercise, getting your head in the right place and all the good stuff in life.

Good luck with the blog. We are on FB also, it's private and doesn't post to your wall. email Sebby if you want to come over.

Take care


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Re: New member from US

Post  coralburn on Fri Mar 18, 2011 2:06 am


Thanks! The nurse practitioner I'm seeing for my vulvodynia wants me to get physical therapy eventually, but doesn't think I'm ready yet, so I'm just starting off on meds. I also made an appointment to get sex therapy, which should be interesting... I think I probably need normal therapy too with everything going on in my life, though. And I hadn't even thought about how staying social, exercising, etc could be important in healing. Thanks for the advice!



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Re: New member from US

Post  Mouse on Fri Mar 18, 2011 2:27 am

Hey Coral!

Nice to meet you.

Now my therapist is a sex therapist. My initial gyny had no idea what vulvodynia was (imagine that!!!) so said (via her receptionist) use evening primrose oil and find a sex therapist ggrrr I still scowl in her direction every time I drive past. She was a stupid bitch! But I was desperate so sent off an angry email to the sex therapist who writes for the Sunday paper and the rest is history. She is amazing and I don't think I need any other type of therapy as well. She is a psychologist who specialises in sexual problems. You couldn't get a bigger sex problem than this one. Well actually you could but this is our show Smile

They are fairly keen on creating a sex positive world. Well that never occurred to me till this came along. It's a whole new world!

I think our challenge is to heal the whole body. I'm more inclined to look at everything I put in my body or do to it than look for another pill or potion now. It fascinates me that people on the celiac forum I'm also on whine about how they can't heal but still eat processed foods that are not completely GF in most of the world. They are in NZ but they are also full of fat and sugar. I mean if you are reading the bloody label to check for gluten check out the fat content at the same time. I was the biggest sugar addict six months ago but have realised I need to heal so it's worth the effort. Sugar is acidic and I want to stop the burn.

Do you feel like you are ready for PT? I think you also need to take control of your own path. You will end up knowing more than most of the experts eventually. When you live this you have a different perspective. There is no set formula and everyone responds differently. It's difficult to find two people with the same symptoms but we all have little pearls of wisdom. Yes I am 95 Smile



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Re: New member from US

Post  Sebby (Admin) on Sat Mar 19, 2011 8:51 pm

Welcome Coral to the forum.

Firstly I have to say I'm really impressed with your blog and have it on my favorites Smile

I have had some form of V since I was a teenager. I have had relationships and intercourse but it was always painful and I just thought it was anxiety. It was only when I devolped constant pain and sex became something I couldnt bear to think about that I made the link.

I am currently doing biofeedback home training as prescribed by Dr Glazer author of 'The Vulvodynia Survival Guide' and part of my treatment is to start masterbating again! so i've ordered another vibrator as my one made my clit sore lol I have to calm it down a bit I think. I was only doing it 3 times a week like prescribed!

Part of my prescription is also to start dating again. This one I have not taken up just yet as I am very scared. I keep thinking Im a women who at the moment cant have intercourse plus I have anxiety and panic attacks. Who would want me! Mum says I just focus on the negative parts and that is not all who I am. I have to agree with her but it is so hard to think positive sometimes.

So keep blogging and I'll keep reading Smile


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Re: New member from US

Post  noni on Sun Mar 20, 2011 3:30 am

Hey Coral!

Youve come to the right place!!! I really have Sebby and the other ladies to thank for saving my sanity!!!

A little bit about me: Im 23, am on Elavil (Amitriptyline) 30mg (have worked my way up), will soon try dilators, and I am really looking into Physical Therapy for the pelvic floor muscles, a radical diet change (limit sugar, salt, caffeine, no alcohol/cigarettes)

Coral, there are so many ups and downs with this. But by far the best source for support and advice is right on this forum!!!

My specialist appointment at the Vulva Clinic is at the end of this month. Im sooo anxious its killing me!! Eeek.

Smile Anyways....take care Smile



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Re: New member from US

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