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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

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


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Post  MLily92 on Thu Nov 06, 2014 11:52 pm

After going to the physiotherapist a couple of times and going to a specialist it has been confirmed I have some sort of nerve damage or slight entrapment in my lower back from a previous injury. I didn't have to do much to inflame it but thats were the pain is suspected to come form.

The tingling in my vulva area and urethra has dampened considerably over the last two weeks. I go to the toilet a normal amount of times, I get up maybe once a night, twice on a bad night.

The physiotherapist and vulva specialist said that in time the pain will go and my pelvic floor muscles will release and relax.

My treatment so far;
- Pelvic Floor Physical Therapy (Once a week or once a fortnight - teaching myself to release pelvic floor muscles again and stretching).
- Ultrasound (Once or twice a week - deep heats allows blood flow and muscles to relax more/less spasms).
- Amitytripline (ENDEMP) (Started on this again for six weeks, then continue for 3 months if effective to stop pain cycle)
- Stretching and relaxing exercises once a day
- Hot water bottle applied to area and muscles as much as possible through out the day to help relax muscles.

I'm also considering complimentary therapies e.g. massage and acupuncture and possible chiropractor.


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Post  sailor_moon on Sun Nov 09, 2014 10:10 am

Oh wow thats crazy! Who would have thought? Glad to hear you got some treatment and results! Smile did you end up seeing a vulva specialist in Newy?

I hope it all works for you! I have heard a few stories like this!

 If it does and I don't see success, can you give me your specialists name and info? 

Let me know how the Endep goes too. Apparantly it can really knock you out and make you super drowsy the first few weeks.

I pray you have found the right treatment.  Keep us updated on how it is going! ☺️

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Post  MLily92 on Mon Nov 10, 2014 6:29 am

Yeah I know write, its been really good the last couple of days, had a bit of trouble today but I think I'm on the mend thank god.

Yes, I did end up paying to go to the private specialist and she agreed with the physio, however I'm still keeping my appointment for the John Hunter just in case it doesn't clear up by then (thats in Feb).

The first time I tried Endemp I was on a higher dose 20mg and that really smacked me out at night. But I'm on 10mg this time round and I haven't had any side effects at all. I'll up it if I think I need to but I'm going to wait a couple of weeks first.


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