Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Tuesday, 7 April 2009

Tuesday, April 7th, 2009

World Health Day. Well, that's a bit ironic. Woke up with terrible post-exertional aches and pains in my legs again (as I knew I would), chest pains, as well as a sore throat and the snuffly nose of someone about to come down with a cold or a nasty dose of flu. All of which made it very difficult to go out again, but, since I had a hospital appointment, I couldn't postpone it.

Took the early bus to catch the train, but because the sun was shining (shock), it was too warm in the bus and I had to get off again as fast as I could because I felt so nauseous and thought I was going to throw up. Train journey was thankfully uneventful and I managed to catch the free bus to the city without having to wait as that was waiting outside the station.

Having had to come this far, I wanted to combine the trip with some shopping, so first I had something to eat, sat down for a rest and a coffee, but I'd had enough after looking round only three smallish stores and could do no more.

My legs felt like lead, were incredibly painful and I was absolutely exhausted already, so I gave up and went to sit in a cafe. Rather than make matters worse still by trying to hop around on buses - I really can't cope with this on any level; bus journeys are painful with the jolting, so the less, the better; I don't know the area, so I didn't know what buses I could catch and last time, I had to catch 2 different buses, wait around in less than salubrious looking surroundings and the bus stops are not that near the hospital - I got a taxi to take me to the hospital and took his card so I could get back to the station later.

As there are never any buses in this area at times you want them, I'd have to take a taxi from the local station home too, which means these hospital trips also get rather expensive. The cost of just this one trip added up to more than a third of my weekly benefits. But the "charitable" neighbour car service is no cheaper, it just provides convenience of a car, door-to-door.

And the upshot of today's outpatient visit is that it looks like I may have yet another pain problem / invisible syndrome to add to the laundry list: one I'd never even heard of until a few days ago, Vulvodynia.
"If you were unfamiliar with vulvodynia, you might make the rational assumption, based on the name that is was connected in some way to the vulva or the vagina, both would be right (guesses about Volvo cars would not, however, be correct)."
All we were trying to do was a smear test, but this proved impossible, despite 3 different people having 4 attempts (all with the utmost care and patience.) I'll spare you the fine details (definitely too much information) beyond that the pain was truly excruciating and felt as though I was being ripped apart like a chicken having it's wishbone pulled. It was a burning, searing, stabbing, tearing pain ... The whole experience was really harrowing and traumatic actually, enough that I screamed the place down, involuntarily. No, I'm really not exaggerating and, no these things didn't used to bother me in the slightest.

Dr. John Willems, head, division of obstetrics and gynaecology, Scripps Clinic believes that vulvodynia is a subset of fibromyalgia. (And, I'll bet he's right too.) It also says, "Vulvodynia is also frequently found in patients suffering from interstitial cystitis." The symptoms of which I've had for 35 years. It's also been more than 20 years since I found I couldn't use tampons; at least 10 years since I chose to have any sexual relations and had been around a dozen since I'd seen a gynaecologist, so this has probably been developing silently along all my other constantly worsening pain. Just never connected it all before. 

They suggest I discuss this with my GP, so that I can be admitted to hospital and be fully sedated to get this done. Noooo. Outpatient visits are one thing, but that's beyond my limit for entering any of the UK's third-world hospitals, voluntarily.