Log in

I forgot my password

Latest topics
» Can you guys tell me your experiences with diflucan/Fluconazole?
Yesterday at 1:29 am by ryn207

» So frustrating!!
Yesterday at 1:25 am by ryn207

» Looking for suggestions or encouragement
Yesterday at 1:19 am by ryn207

» Looking for a friend..... and new problems
Mon Jan 15, 2018 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

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: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 5

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 …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

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 …

Comments: 1


My belated story

View previous topic View next topic Go down

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!!
avatar
ButterflyLiz

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

View user profile

Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum