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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


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

Finally found what I think is wrong with me!

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Finally found what I think is wrong with me!

Post  Emily20 on Sun Dec 26, 2010 11:31 pm

I've been suffering for the past 4yrs or so with what I thought to be Cystitis, however, I've always known that it wasn't quite the right symptoms for cystitis. Anyway, with another bout of what I thought to be cystitis today, I got quite sick of it and decided to research further and found Vulvodynia - symptoms match almost perfectly and I feel pretty relieved. However, I've yet to find a doctor in my area good enough to diagnose me with it, if this is what it is. My current Doctor keeps diagnosing me with cystitis, however the pain had always been external, and has made me unable to work, sleep or go about my daily life as normal. It only comes on in bouts of pain and I don't always have it. However, when I do, I need to sit on the toilet for hours on end until the pain has gone as this seems the only way to relieve it. I also find drinking lots of water helps which sounds like a water infection but all the symptoms of Vulvodynia match up too.....this is now the only thing I'm doubting. I also get dull aching/burning pains in the vulvic region when I sit for too long which I've always thought strange until now. After sexual intercourse I get what feels like a friction burn - another symptom explained! I was also wondering where everyone is from? I'm from the UK and it seems most cases are in the USA, and unfortunately all the treatment seems also to be in America. Just wondering if anyone knows of anywhere in the UK and if anyones had the similar symptoms of prolonged time on the toilet and drinking lots of water to relieve pain? Any help would be fantastic!
Thanks. :-)

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Location : UK

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Re: Finally found what I think is wrong with me!

Post  Sebby (Admin) on Tue Dec 28, 2010 11:38 pm

Hi Emily and welcome to the forum

Im from the UK..and so are many of the members on here. We also have members from the USA and other countries..

When I was first having the symptoms on a regular basis I thought it was thrush and so did the GP. I got a little suspicious after my tests came back negative of course! Its so common for drs to either think its a yeast or unrine infection.

Im guessing the main reason so much time on the toilet helps is that you having nothing putting pressure on your vulva area and so find the pain calms down. I too find sitting painful so tend to sit with my legs up on the sofa or lie down. The pressure on the vulva area does make the syptoms worse. I get stinging, burning and rawness. Its like if any part of your body was sore pressing it makes it feel worse!

A good tip one of our members has given is to get yourself a doughnut cushion..it has a hole in the middle so you can sit on it and have no pressure on your vulva area..much like a toilet seat!

I can also relate to the friction burn type pain after sex..I have always had this after sex so its been an issue as long as I have been sexually active. I am not in a relationship at present but in terms of sex I have found that being intially on top helps as you have more control of thrusts and also lots of lube!! Also on the painful days try other forms of sexual pleasure and don't worry to much if you cant always have intercourse..Ive never been the type of girl who could 'go at it' every day lol so have had to be quite creative!

I havnt tried the drinking water thing..I mite just do that although I can see that I will be then spending a lot of time on the loo! There is one theory that there is a certain substance called oxalates which are thought to irritate vulva tissues as its found in urine and that by drinking lots of water helps to decrease the absorbtion of these oxalates so they will of course irritate the tissue less. There is also a special diet that you can follow to reduce oxalates in the body..unfortunatly oxalates are found in chocolate and tea!! Anyway I did read in the 'Vulvodynia Survival Guide' that by drinking lots of water you can reduce the Oxalate crystals in your urine by up to 80% anyway by drinking lots of water whereas following only the diet will not reduce it half as much..

As for treatment in the Uk I suggest asking your dr to refer you to both a Vulva Clinic..yes we have clinics just for vulvas! who knew! and also a pain clinc. They can then both look at various treatments from medications to nerve blocks etc whatever works for you. I also suggest as many of the members have suggested to me to get physical therapy. I am getting refered for this in the new year and have received two recommendations from emailing this website


I hope some of this info can get you started..dont give up if one treatment does not work keeping going thats what im doing

Godbless and Take Care


Sebby (Admin)

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Location : London UK

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