Vulvodynia – What’s that then?

* Warning – This blog contains icky stuff and lots of feeling sorry for myself! *

What is this life if, full of care,
We have no time to stand and stare

Until less than two years ago I had great difficult keeping still. I wanted to be busy all the time. I would quite happily go straight from work to the pub or a café most nights of the week and even started going to the gym. In my free time, when I actually had any, I would play the piano and computer games. Whatever money was left over after paying bills went on alcohol, meals out and fashion; essentially anything I enjoyed doing. If I didn’t have something planned for an evening or, woe betides, a weekend then I would get depressed. I couldn’t stand to be bored. I was going to live it up while I could. Illness was something that only people who were older had and, in any case, what sort of person let’s illnesses stop them from doing things?

Then along came Vulvodynia. Or vulval vestibulitis. I’m not even sure which of the two conditions I actually have. It’s likely both as they are interchangeable and one and the same though with slightly different symptoms. I went to bed one day perfectly healthy, or so I thought, and woke the next day in discomfort. A discomfort I have subsequently felt every day since with no end in sight.

Ok this is where the gross stuff starts. If you feel uncomfortable when people talk about sex or at the mere mention of ladies bits then you may want to stop reading, make a cup of tea and do something else.

For those of you who are still reading I will now attempt to explain some of my symptoms and how Vulvodynia affects me. If you have found this blog by chance then you will likely already know all about how it affects you so I apologise for “teaching you to suck eggs” and all that.

Wikipedia describes the condition as “a chronic pain syndrome that affects the vulvar area and often occurs without an identifiable cause or visible pathology”

It is not known how many women suffer with Vulvodynia however the general figure is around 15%. I would say this was quite a high percentage for something that doctors barely recognize or understand.

Symptoms of Vulvodynia include:
-Burning, stinging, Itching and Rawness of the Vulval area.
-Pain in the vagina during insertion.

Symptoms are often felt whilst sitting, cycling, during sexual intercourse or tampon insertion. The symptoms may be all the time or just once in a while and may or may not be triggered by anything in particular.

Symptoms can occur at the entrance to the vagina, the labia or even the clitoris. There are also many interchangeable conditions that are all linked – Vulvar Vestibulitis, Interstitial Cystitis and Vaginismus to name a few. No one really understands what causes the condition, why it varies from person to person or the best way to treat it. What every woman who suffers with the condition understands is that it can be a nightmare to live with.

Causes may include:
• Nerve injury
• Abnormal response in vulvar cells to an infection or trauma
• Genetic predisposition to inflammation
• Allergies or irritation to chemicals or other substances
• Hormonal changes
• Frequent antibiotic use
• Sensitivity to yeast infections
• History of sexual abuse
• Over treatment for other Vulva conditions

Just the fact that the condition is so variable is in itself part of the frustration of the condition. I have spent hours wracking my brain, attempting to work out what is causing my pain and how to improve it. My Biochemistry degree is not proving all that useful.

My symptoms are mainly: Sore, stinging, burning, raw sensation when I sit down or lean forward from a seated position. Sex is almost impossible without some level of pain and so my sex life is practically none existent. I find I use the toilet a lot more often and have excess discharge that coincides with the pain. My pain comes and goes in flares. Some days I will have no pain and then a flare will start from nowhere and last for weeks. I also get lower back pain, extremely painful periods (with my Vulvodynia pain being at it’s worse at this stage) and muscle pain in the pelvic area.

Sitting is the main trigger of my pain. Long car journeys, playing the piano, spending the whole day at work and then sitting in the pub for a few hours are all hell. Essentially the less time I can spend sat down, the better. I now can’t wait to get home from work to get in the bath and go to bed. Sometimes I spend over 10 hours in bed! This has meant my hobbies and my social life have mainly gone out of the window.

Trousers are now a complete no-no. Tights and leggings aren’t much better and to be honest I am at my most comfortable when I am lounging on the settee completely commando. (I warned you!)

Coming to terms with not being able to wear my jeans anymore was, as silly as it sounds, one of the hardest parts of accepting this condition. I’m a rock chic at heart and I lived in jeans and t-shirts. I didn’t even own a dress! Now that’s practically all I own. Flowery, girly things that, while they look beautiful, I feel they didn’t reflect my personality.

There is also the depression. Dark day’s where I can’t believe my life has changed so dramatically. I always wonder “Why me? Did I do something in a past life that I am being punished for? Did I bring it on myself with something I did?”

The money! £100’s on new clothes and shoes, £500 on getting a private diagnosis when they NHS couldn’t work the condition out (this is a blog entry in itself!) and the £100’s I am yet to spend on medications, treatments and other things to attempt to alleviate the discomfort.

And of course the most frustrating thing of all is the lack of sex. The pain I experience when trying to have sex is horrendous. Plus when it feels like someone is constantly sandpapering or blowtorching your lady parts you don’t really feel all that sexy. “That was wonderful darling. Now excuse me a moment while I cry, rub my bits with ice and limp for a few days!”

These are just my symptoms. Other women suffer far worse than me and sometimes with varied symptoms.

So I go out far less, I have less sex and I wear dresses all the time. My money is spent on pills, potions and lotions and I spend far more time in bed than is probably healthy. However, I also spend more quality time with my fiancé (who is an absolute star by the way. I am very lucky) and I go for gentle walks on a regular basis. My life has slowed down and, you know what, it’s quite enjoyable. Small things like lying out doors with a good book and appreciating nature are all bonuses. I have started to appreciate the small things in life. So I guess that whilst Vulvodynia has taken things from me in return it has given back in the strangest of ways…..

A poor life this if, full of care,
We have no time to stand and stare.

Next time – What is that burning sensation? The day I woke with Vulvodynia.


One thought on “Vulvodynia – What’s that then?

  1. Pingback: Lichen Sclerosus And Vulvar Cancer Won't Stop Me - The Good Mother Project

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