My belated story

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!!