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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

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 …

Comments: 4

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 …

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

Hello,

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


My belated story

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My belated story

Post  ButterflyLiz on Mon Dec 26, 2011 10:36 pm

Hi all,

I’m belatedly adding my backstory here, in case anyone is interested in my pain onset / symptoms & things that have subsequently helped me.

By the way, I’ve copied & pasted the below from a document I keep up to date & take with me every time I see a new medical professional. Saves loads of time for them to just read through it rather than asking me a million questions and me trying and failing to remember everything that’s happened over the last ten years. Plus they can keep it in my file to refer to. I would definitely recommend doing this, it really helps & always goes down very well!

Symptoms:

I have both background and on-touch vulval pain.
Types of pain experienced; stinging, burning, stabbing, rawness
Pain is worse when sitting for long periods of time & improves when lying down.


Current medication:

150mg pregabalin / day
Cilest contraceptive pill

Treatment history:

My vulval pain started in December 2001 (when I was 16 years old), 9 months after I first had sexual intercourse. To start with there was just pain on penetration, however over time it came to be that pain was present at some level most of the time.

In June 2002 I was diagnosed with vulvodynia (then known as vulval vestibulitis) by Dr Munday at Watford General Hospital.

The first drug I tried was amitriptyline, the dosage of which was gradually increased up to 150mg per day. However, I did not feel any benefit from this and so stopped taking it in March 2004.

I was then briefly put on gabapentin but felt very sick on it so did not continue.

By this time I had moved to Northampton and was sent to the pain clinic at Northampton General Hospital. This was around February 2005. They offered me a TENS machine but this had no effect on my pain. They also tried injecting anaesthetic into my genito-femoral nerve but this also had no effect on the pain.

In October 2005 I was referred to Wendy Reid at the Royal Free. She suggested I try taking antihistamines and using lidocaine gel every night and seeing how I got on. These measures did seem to help. In 2006 I had several physiotherapy sessions working on my pelvic floor, which included biofeedback as I had developed some vaginismus.

In December 2007 I had a significant pain flare up and went to see Wendy again. At that point I started on pregabalin, which is the only medication that I would say has ever had a significant impact on the pain. I started on 150 mg / day and this was slowly increased to 300 mg / day. Gradually, my day to day pain began to lessen and I was able to have almost pain-free sexual intercourse for the first time in many years. However, I was aware that even then the condition never completely went away.

In July 2010 I agreed with Wendy Reid to taper down and then stop the pregabalin, as it had probably helped all it was going to. However once I had done this I had two very bad pain flare ups – one in October 2010 and then another in January 2011. This second one left me extremely shaken as the pain was intense – so bad that I ended up taking two days off work. I subsequently developed anxiety and panic attacks, for which I went on a three month course of citalopram.

I went to see Wendy who put me back on the pregabalin at 150 mg / day and I have been on the same dosage since then. So far I have not had another flare-up. I am also having CBT sessions to help me cope better with the negative thoughts I have surrounding my condition and more physiotherapy to re-learn how to relax my pelvic floor muscles.


Self-help techniques used:

• Pressure relief cushion at work and in the car
• Aqueous cream – this is very soothing & is all I use to wash my vulva
• Vagisil (topical anaesthetic containing lidocaine) – although sometimes I cannot tolerate anything on my vulva
• Ice packs
• Try to avoid restrictive clothing and underwear


Other conditions:

• Extremely painful periods when not on the contraceptive pill
• Mild IBS
• Mild asthma
• Occasional thrush
• Poor circulation to hands and feet (get very cold)


Btw, the latest is that I’m due to have a pelvic MRI scan on Thursday. Not sure that anything will be found but it’s worth doing to rule things out, especially as I still have an instinct that something is structurally wrong somewhere in there.

I’m also going to have a bilateral pudendal nerve block at some point, but there’s a waiting list for that. Which I’m not complaining about, because I’m TERRIFIED of having it done!!
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ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

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