Burn Baby Burn!

You, your sex is on fire!

I can’t believe I’ve had over 200 views since yesterday. That really is incredible 😀 Thank you to everyone who has taken the time to read my musings. That’s another 200+ people who are now at least aware that Vulvodynia exists and that can only be a good thing. As I am having a fairly pain free day today I thought I would keep the momentum going by writing another post. I promise I won’t write them too often. I don’t want people getting bored 😛

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So, the day I woke with Vulvodynia. That sounds really dramatic. In truth, it was a fairly gradual process. This may get a little complication so I apologise if it doesn’t make much sense.

I actually suffered with Vulval Vestibulitis (VVS) long before my full Vulvodynia started though at the time I had no idea this is what I had.

Vulval Vestibulitis is Vulvodynia localized to the vulvar region.

I firstly realized I had problems when I was at university, approximately 6 years ago. Me and my Significant Other (SO) hadn’t been going out that long and we had just got our first bit of freedom. We were away from our parents and had our own flats for the first time in our lives so you can imagine what we did. That’s right, we had sex. Lots of it. Well what else are you supposed to do to pass the time as a student?….

At first we had no problems but after about a year I started to notice sex becoming increasingly more and more painful. I initially put this down to having too much of it and maybe becoming bored of my SO. However as time went by the pain got worse. I would describe it as a burning or cutting pain upon entry during intercourse. There was also a friction-like sensation.

I can’t quite remember what happened at that time, but I know I ended up seeing a doctor and then going to hospital. They informed me that I likely had an extra bit of skin at the entrance to my vagina that may or may not be causing pain. They said they could remove it but this would leave painful scar tissue and so their recommendations were steroid cream. Also clearly the stress from university probably meant a lot of it was in my head.

Now I have used steroid creams for the eczema on my hands for a long time and I have seen the mess it has made to my skin. There was no way I was going to put that stuff on my V-jay!

After trying our hardest to just “get over” my problem we took what I believe was a brave step for two university students who had only been together 2.5 years. We sought couples counseling from the charity Relate. Please check out their website as they are a good charity.

We saw a very nice lady who diagnosed me with and treated me for vaginismus. Yet another V condition.

Vaginismus – a condition where the muscles in the vagina tense suddenly, which makes any kind of vaginal penetration—including sexual intercourse—painful or impossible. This tension is not consciously controlled. Essentially I was subconsciously associating sex with pain and my vagina was shutting itself. Nice! I didn’t understand why that was happening but assumed it was partly to do with this odd piece of skin the hospital mentioned.

Using all the tips and tricks she taught us things did start to get better but they were never right and sex has never been particularly present or enjoyable. My SO describes my face during penetration as “a bulldog chewing a wasp.”

Now this is where the generalised Vulvodynia makes its appearance. Finally I bet you are thinking!

I was on a training course away form home for a few weeks. Within the first few days I started feeling this awful burning sensation down below. I was at this point wearing trousers and I  figured maybe they were too tight. To attempt to alleviate the discomfort I kept disappearing off to the toilet or running up stairs to sit in the bathroom naked. I had my own room don’t worry! I also noticed I was discharging more than normal.

When the burning got worse rather than better I decided enough was enough and went to the local hospital. There I was informed that I had a minor infection and was given a few days antibiotics. These of course didn’t work and the burning continued to get worse. I saw my local GP who, upon examination, decided I had thrush. I was advised to get two lots of treatment and give it another week. She also took swabs just to be on the safe side. The pessaries and the cream seemed to do nothing and if anything made things worse. By now I was regularly on the phone to my SO crying whilst I lay in bed fanning my vagina with a book!

The swabs came back negative so I was told to try a different fungal cream and see how I got on. I went on holiday to Spain, where the condition did ease however that was probably because I was relaxed and not sitting down as often. Upon returning to England I was still suffering so back to the Doctors I went.

I can’t remember how many examinations and swabs I had done. Every single time they put that damn speculum in me I nearly hit the roof. One time the strength of my vaginal contractions forced it right off the bed! It’s funny now. It wasn’t at the time believe me. I had several medical experts tell me that “there was nothing there” and “maybe it will go away if you don’t think about it.” Not helpful. I was also prescribed Vagisil cream. Do not use this cream if you have similar problems to me. I suffered what felt like minor chemical burns. Evil stuff.

So after spending more than 6 months getting nowhere and having to make some of the lifestyle choices I mentioned on a previous blog post I was finally referred to the hospital. Yippee! I was finally going to get to see someone for a diagnosis.

I went along and after, you guessed it, another internal examination (this one included my bottom :-/ ) I was told I had Vulval Vestibulitis and my choices were surgery or a low oxalate diet.

I instantly had two concerns from this diagnosis.

1)    I had, by now, research Vulval Vestibulitis and I realised that my sex problem was most likely down to that. The original hospital wasn’t actually that far off at all. However I knew that my other symptoms were different and I felt it was silly to dive straight into an operation without trying other routes first. This is my vagina we are talking about! I was sure I had general Vulvodynia as well as Vulval Vestibulitis.

2)    Surgery vs diet change. Those are very polar treatments. How can they both treat the same thing effectively? Surely I should at least try the diet first?

I said as much to the consultant who at which point did something that upset me more than anything and this is quite silly of me. He stood up, shook my hand and said, “I really feel for women who suffer with this condition. I don’t know how you manage it. Good luck” or something of that nature. And that was it. I was discharged back to my doctor. I cried a lot that night I can tell you.

Well of course me being the difficult bugger that I am, and of course me having a biochemistry degree, I decided to research the low oxalate diet. At that time I could find no conclusive evidence that this diet really helped women with VVS. Kidney stones, yes. Interstitial Cystitis, probably but nothing conclusive for VVS. (Please note some women have said that it has helped them. For me personally I weighed up the stress of the diet vs the likelihood of success. This does not mean it would not work for you. I am not a doctor.)

The low oxalate diet involves avoiding certain fruits and vegetables, some nuts, some dairy products, some grains and all soy products. This list varies from Website to Website and I was supposed to do all this on my own with no dietician support. I decided it was too much and my doctor agreed. The stress it would cause plus some of the other health conditions eating such a limiting diet might cause worried me. Plus I had already started to weigh up the option of going private and had found the consultant I wanted to see. My doctor agreed with my decision, admitted there was little else he could do and he referred me.

I was about to get some posh private treatment and a maybe finally a cure! Or so I thought…..

To end on a positive note – My star of a SO actually proposed to me in Spain even with all these problems and obviously I said yes. 😀 I would therefore like to take this moment to thank him for being a truly wonderful person and to say I love him very much. I’m sorry our sex life is on the internet.

Next time – Private treatment and the vestibulectomy!

 

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.

Blogs are for the self-obsessed

What sort of person has the time to write a blog? And why would anyone bother to read someone else’s self absorbed ramblings??

I am ashamed to say that this was my opinion of blogs and the people who wrote them. That was before I developed Vulvodynia; a relatively unknown health condition that changed my life overnight in some completely unexpected ways. It is a condition that the NHS and the medical profession in general know very little about.

Blogs turned out to be one of the best ways I could find help, guidance and support whilst trying to understand and come to terms with this condition. Those written by women suffering from this same, relatively unknown condition that were also experiencing the same struggle as me proved to be invaluable. It was at this point that I realised that, not only did blogs give people the ability to share their thoughts and connect with people, they are great for spreading knowledge and giving people faith when before it seemed there was little hope. Yes they can be self absorbed however they often contain some really good bits of useful information and can bring people together in a way that previously wasn’t so easy.

Therefore, I too have decided to write a blog and to jump on the bandwagon. I want to give back to those women who unknowingly aided me in the past. I’m hoping also at the same time to offer support and guidance to other people who may also suffer with vulvodynia and will spend endless hours trawling the internet for just a little bit of advice. People who just want to feel they aren’t alone and that someone else understands what they are going through without the embarrassment of having to talk face to face to someone about a rather private problem. It also gives me a chance to flex my writing skills and I’m already realising just how little I know anymore about writing!!

SO the aim (hopefully) of this blog is to describe what life is like living with Vulvodynia, explain how I ended up where I am today and describe some of the treatments I have so far tried to help ease the constant suffering. Even if just one person reads this blog and thinks “you know that sounds like what I am suffering with. I am going to go to my doctor and tell him/her that I think I have vulvodynia” then this blog will have succeeded.

I have chosen the name Tender Trips as I think it sums up how life often feels – one long, tender trip.

Note – I promise this blog is not going to be one almighty moan from me about hard my life is blah blah blah…… I won’t let my life be ruled by Vuvlodynia and so neither will I let it rule my blog. I hope to talk about other things and include the random musings of the slightly odd person that is me! However be forewarned that there will be moaning. It is what I do best afterall!

Ack! That’s the first one done. Scary…

So what sort of person has the time to write a blog? Well that would be me. And why would anyone want to read one? Well…I’ll leave that up to you.