Having been referred for investigation last year, because of fibroids, a possible polyp and because it has proved impossible to undergo a simple smear test due to the extreme pain of the process (presumed to be due to vulvodynia cohabiting with fibromyalgia/me/cfs), I was scheduled to undergo a hysteroscopy (smear and swabs done) on January 5th. First, I have to say that the consultant I saw once I was referred and the surgeon I spoke to yesterday, both seemed very patient and personable. The rest of it though - I now know (I used to merely think) that I would rather die than be admitted to any NHS hospital in the UK.
Oh, I know one reads horror stories all the time about Britain's bug infested hospitals, but at least part of one's brain likes to hope and believe that nothing can really be quite as bad as they portray and that stories must have suffered some Daily Mail style fear mongering and exaggeration. No. If anything, comparing UK hospitals to the Third World is grossly unfair to the latter.
Whilst Southampton General Hospital has a pretty terrible reputation (it started as a "Poor Law Infirmary", so you might say not a lot has changed), on the surface, the Princess Anne Hospital next door doesn't seem too bad. Once you scratch the surface, it's another story though and now I've seen for myself that things are actually much worse than described in the press. On top of that, the suitability of the severely cost-cut accommodations to people feeling even a tiny bit under the weather, let alone those who are properly ill ... well, they're not suitable. For someone who already suffers chronic illness, they're nothing short of torture.
On December, 31st, I had to go for a pre-op assessment. I felt, reasonably, I expected this to be an assessment of my state of health and suitability for the surgical process. Instead, I was left with the distinct impression that it was merely a screening process to ensure that I was not going to further infect the hospital with Norovirus, MSRA or something of it's ilk. Of course they need to be doing plenty to prevent such infections, but not to the rather transparent exclusion of the health needs and dignity of patients.
They seemed totally uninterested in my history; the nurse didn't even want to know about my fibromyalgia and ME/CFS and told me off like a child for not having brought the letter (I'd received back in 2008 from my rheumatologist elsewhere) to "prove" these diagnoses and, refused to even look at the print out I took with me detailing the special considerations that need to be taken and asked, snottily, if I'd got it from the internet. (See also Fibromyalgia and Surgery and Facing Surgery With Fibromyalgia & Chronic Fatigue Syndrome.)
I had also printed off and took with me yesterday (I didn't get around to showing it to anyone, but I don't think it would have been welcome), all 27 pages of this excellent “Hospital Booklet”from The Grace Charity for M.E., entitled "Information for hospital staff regarding treatment of patients with M.E. (Myalgic Encephalomyelitis)." On Page 11, it says:
"It is important at the pre-assessment that the nurse is familiar with the information in this booklet."Yeah right. She didn't even know what fibromyalgia and ME were, much less was about to make any concessions for them. I was weighed. She took my word for my height. Despite making a point of mentioning frequent shortage of breath, chest pains and a tendency to collapsing episodes, she just dismissed them and I was not given an ECG. I didn't press the point either, but only because I'd had one a couple of days prior at my GP's surgery, but the hospital didn't know that.
She snapped at me as if I was a small child, when I told her that I've twice had bad reactions to anaesthetics (first time I was 13). Both those times I couldn't even get myself to the toilet (had to be dragged over a bed pan) for 10-14 days afterwards. I don't have anyone who can accompany me, I don't have anyone capable of looking after me at home after surgery, so I asked if they could keep me overnight, but she said they don't do that. It's a day surgery unit. Then she phoned one of the wards. They don't allow beds to be booked. She was sure I could find someone (I can't), otherwise I'd just have to turn up and hope I could be given a bed on the day. Clearly unlikely and too much of a risk.
My nose and groin were swabbed for MSRA, however, then she tried to insist I use some nasty chemical wash stuff to shower for 2 days before, the day of and 2 days after surgery. I reminded her of the fibromyalgia and ME yet again, a well documented sidekick of which is Multiple Chemical Sensitivity and told her there was no way I could use that. She asked if I'd got that term from a doctor. Yes I did. Pity I also didn't take the letter I have from Allergy UK, "To whom it may concern ...", detailing that I have all the symptoms of Multiple Chemical Sensitivity and along with it, another long list of things I should avoid. She told me to buy Simple Soap. Sorry, I can't use soap. No, not even simple! Told her I was sorry I couldn't fit into her tick boxes, but my life just isn't that "simple."
The inference though, from being told to shower - and how to shower and what bits to pay close attention to (like I wouldn't naturally pay attention to them?) ... I was made to feel that the hospital assumes all of it's patients are filthy, dirty, lazy, lardarses who only bath once a week, "whether they need it or not". Or maybe less. And maybe some are, but I was deeply offended.
Then she started telling me at breakneck speed where I had to go, across the road at the Southampton General Hospital, for a blood test. For the Nth time, I have brain fog, even if you explain slowly, I'm not going to remember multi-step directions. The only bit I did get was, "Turn right at Burger King."
WTAF? Burger King! Inside a hospital?
OK, maybe this became "normal" in UK hospitals while I was away, but you walk through the front doors and what you see is a not a hospital, it's a bloody shopping mall (almost indistinguishable from an airport or other similar capitalist worshiping place) with a branch of WH Smith, some gift stores, a couple of coffee shop franchises and, at the rear right-hand corner, a Burger King.
Nothing like offering sick people healthy food choices, is there?
As it was around 2 pm when I'd finished there, I was getting hungry and I did need to eat something. If I didn't, I'd probably have one of my nearly fainting episodes and I really try hard to avoid those while I'm out, lest I should seem vulnerable, be attacked or get robbed. So I looked around at the choices on offer and decided against the crusty baguettes which all contained real meat and/or hunks of cheese (on the basis that I don't normally eat either meat or dairy and my few remaining teeth are no longer up to the task of crusty baguettes); rejected all the cakes and pastries on the basis that they would only increase both my pain and fatigue levels and plumbed for what seemed "the least of all evils": a burger (almost no meat), on a more eatable soft bun. Probably a HUGE mistake.
That day having been the start of the nasty cold snap, the whole "expedition" had been really difficult for me. Waiting for buses and on train stations, I'd got excessively cold, which alone caused me more aches, pains, fatigue and another massive post-exertional malaise crash. But whether it was the burger, the accompanying drink (given that 48% of fast food restaurants tested had faecal bacteria on the soft drink dispensers and in the drinks), or just visiting the hospital, I can't really say, but on the following Monday morning, January 4th, I was visited by a mega-painful stomach upset, mostly fitting the profile:
"After approximately 1 to 2 days, Norovirus symptoms can appear. The principal symptom is acute gastroenteritis that develops between 24 and 48 hours after exposure, and lasts for 24–60 hours. The disease is usually self-limiting, and characterised by nausea, vomiting, diarrhoea, and abdominal pain; and in some cases, loss of taste. General lethargy, weakness, muscle aches, headache, and low-grade fever may occur."In truth, it's never easy to distinguish between "normal" ME/CFS and IBS symptoms and those which may be caused by some other agent, but the pain did feel different from usual and the attack was much more acute, as though resulting from an infection. So, based on advice in the media saying that "Visitors are being urged to stay away if they have suffered from diarrhoea or vomiting in the previous 72 hours", I phoned the hospital and reported my symptoms.
The consultant confirmed that I should not go: definitely the right decision, since the next day we started to get ice and snow. They sent me a letter, rescheduling my appointment for yesterday, January 19th. By then the snow had all gone. My stomach was still only just getting back to it's normal schedule.
Nevertheless, having got up before 6 am, I duly went along for the 07.45 roll call. Hell, that's bad enough for someone with fibromyalgia who "doesn't do mornings." As there was no other way to get to the station (a mile away in the dark), I got a taxi, but waiting on the station, at that time of a cold January morning was too much. My back got very cold and I was soon in agony. In retrospect, knowing my own body and the limits imposed upon it by my illness, I should never have left home, but instead I pressed on and tried my best. In future, I won't.
It was mere luck that the train I'd planned to get was running, because others before it hadn't due to "emergency engineering works" at Bournemouth Depot (actually, I overheard later, a carriage had derailed the night before). From the station, I got another taxi to the hospital, to try to mitigate the effect that the travelling was going to have; to increase my chances of getting through the whole procedure without it causing a major relapse or permanent harm.
The hospital waiting room left a lot to be desired: it was small, cramped and didn't have enough seats for everyone, which had included many family members accompanying other patients. There is a family room outside. The letters said that family were not allowed in the unit. Clearly, this is not enforced and even when we were herded into the ward area, most of this entourage came too.
There's the infection implication: why subject patients to a demeaning screening process if they're then going to allow "all and sundry" in? As we were all there for gynae procedures there was also the privacy issue - I didn't take kindly to other people's husbands hearing me discuss my "parts", the gory details of my menstrual cycle and related matters. I'm no prude, but having to answer the question, "Are you sexually active?" under those circumstances, I found rather upsetting. And the male doctor who asked me this, did so, loudly, as he was crossing the ward.
And the facilities in the unit itself were nightmare-inducingly atrocious.
Way back when I was 11, I'd gone on a Summer Camp trip to Kent with my school. We'd stayed in rows of metal bunks in corrugated iron roofed Nissen huts, which I'd assumed at the time had been previously used by the military, but which I was later informed had housed German prisoners of war. The facilities were basic in the extreme and I mention it, merely to point out that, compared to the hospital yesterday, that prisoner of war camp had seemed the height of luxury!
In the Day Surgery Unit, there were dormitory rows of old, hard, outdated looking wooden trolleys. No actual beds. No bed linens. No pillows. They were only a foot or so apart, with just small, hard chairs between trolleys. There were curtains between the cubicles, but given how we were squeezed in like sardines, that hardly afforded much privacy: certainly none at all sound-wise.
Then there were only three nurses and one assistant for a pretty large (~30) number of patients, so another concern was the availability of care and it's implications for pain after surgery. As we'd also been told to bring our own pain medication, this worried me. There's nothing whatsoever sold over the counter in the UK that has any noticeable impact on the level of pain I already have.
The one toilet had no bath, bidet or other suitable washing facilities for one's nether regions, which is impossible for me to live with, given that I suffer from unpredictable irritable bowel syndrome and am prone to cystitis.
So you could get a better idea of what this dreadful, sparsely equipped hell-hole looked like, I thought of Googling for things like "Victorian hospital ward", but all the photos and drawings that came up looked way too comfortable and luxurious. The only image I found that even comes close to what I saw yesterday, was a picture of a Workhouse interior. No, I'm not exaggerating. The mental image of it is going to stay with me and give me PTSD. Those of my friends who have seen the "uninhabitable" shanty-shack slum I rented in Tenerife will know that I am hardly overly fussy about my surroundings, so you'll know how bad this had to be!
And we were expected to wait on those hard chairs until operation time. I guess healthy people can manage that. The level of my incapacity from the fibromyalgia and ME means I cannot. I can never sit in a chair at home - I have to spend all my time with my feet up, supported by copious cushions - because it causes too much pain to my neck, back, shoulders, hips and legs, as well as ankle swelling, otherwise. It only takes about 5-10 minutes sitting in a chair before the pain levels rise to unbearable. I'd already had enough from travelling.
After an hour or so on that hard, uncomfortable chair (and I never did find out if they were going to go ahead or if a bed was available), leaning as best I could against the wall to try to support my neck to reduce the pain, I could take no more and was almost in tears. By that time, I knew that I could not undergo an anaesthetic and a surgical procedure without it having serious implications - a crash that I may, or may not, recover from. I was all out of spoons.
I'd tried to explain to the anaesthetist and surgeon my concerns based on the two previous times that I'd had bad reactions to surgery / anaesthetics (which I now know were probably due to the ME), but they weren't going to listen.
From past experiences, I also have to take into account:
- That I won't voluntarily accept any risk of an intervention that requires stitches. Although the hysteroscopy does not plan to do so, in the "1 in a 1000" chance of a problem it could. The problem is that I had ONE stitch from a laparoscopy (privately in 1989) and, I know unbelievably, but this is still sore, tender and painful. It's so bad that, if my cat just steps on my belly button, it's like a knife being thrust into me. Not going to risk it.
- I already have such dreadful pain in my hands and took years for the extreme pain to die down after I'd had a drip inserted into the back of my hand once before that I was not prepared to accept that either, so they'd have to find somewhere else to shove it.
- The fact that I just don't recover from "injuries" is further evidenced from the incredible level of pain I still have in my hip from a fall in 2001. The nurse who did my ECG recently warned me to mention this, because she said she'd had her hip damaged during a gynae procedure: thinks they put her in the stirrups at an awkward angle. That already makes walking painful and robs me of sleep, so there's no way I'd want it making worse.
- My neck and shoulders are another of my severely painful areas and the girl next to me was explaining that she'd had her shoulders put out when she'd had surgery there last June and wanted to avoid it happening again. She thinks she was pulled up by the armpits, or basically manhandled. She didn't tell me: that's what I mean about a complete lack of privacy.
- I already suffer with Irritable Bowel Syndrome. Given the anatomical proximity, I don't want anything making that any worse and there's the fact that the findings from that laparoscopy in 1989 (which the consultants then were absolutely sure would show up endometriosis), concluded that all my abdominal symptoms were due to the IBS anyway.
- I've suffered from cystitis since I was 17. I don't want that agitating either. That especially worries me, because several separate people have said that vaginal infections (which always spark cystitis) come free automatically with every intervention in hospitals now. (WTF are they messing with?)
- From my history (which they don't want to know about), I can tell them that my womb is inverted and to one side. That might make the hysteroscopy more difficult and more liable to the "1 in a 1000" perforation risk.
- The methods used to distend the uterine cavity involve chemicals I'm bound not to be able to tolerate and would almost certainly have toxic shock from.
- I simply cannot risk being left in a position where I am unable to look after myself, get to the loo, get myself drinks or food, because my mother is unable and unwilling to do any of these.
It's my body, my boundaries, my decision, as Adrienne Dellwo points out,
"If your doctor, surgeon or anaesthesiologist doesn't want to follow recommendations you feel you need, insist on it. They're not the ones risking a dangerous reaction or spending extra weeks on the couch in pain."In the end, I said to the surgeon that I probably could have managed IF I'd been sent somewhere where I was admitted the day before surgery, so I'd start the day off with as much energy and ability to withstand the stress of the procedure as possible - and not have it made intolerable from the discomfort and exhaustion of having to travel first or from having to spend hours sitting in tortuous chairs.
And proper bathroom facilities.
He's says he's going to write to my GP recommending that we have one more go at doing the smear and swabs in the surgery and, if it still proves impossible, leave it. Given what I've now seen, I prefer his option.
Well, there's a chance that the fibroids will reduce all by themselves once I'm through the menopause and a good chance that the rest of my symptoms only exist because of the fibromyalgia, ME/CFS and/or IBS. My research suggests that even if there is a polyp, it may also regress on it's own; at 52, I don't think I'm bovvered about miscarriage risks and only 0.5% of polyps prove cancerous. If I'm wrong, I'll die, which, given the quality of life I have, is no great worry.
That's a risk I'm prepared to take: being buggered by a NHS hospital - with the risk that it could reduce my quality of life beyond my current 80% incapacity to needing 24 hr care - is not. And with that, I left. All I wanted was to get home and back to bed. Of course, the nightmare day couldn't end there, could it?
Because of the (cough) engineering works (train derailment) the night before, the trains were still in chaos and only just getting back to full running. Some trains had been cancelled, others were running short or late. When I got back to Southampton station, I had almost an hour to wait for the next train that would be stopping in New Milton, so more sitting on hard benches in the cold. Although, the cold, hard metal station bench was MUCH more comfortable than that hospital chair! I'd had a chat with the guy on the ticket barrier to double check the time of my train. I mentioned it, he confirmed that's what he'd heard, but said they aren't allowed to use the word "derailed". Yes, boys and girls, the British public has "officially" become such a bunch of "pussies" that we cannot withstand the shock of hearing a word that says "carriage wheels left the tracks."
On the other hand, we're expected to calmly undergo surgery in ill-equipped hospitals that make former prisoner of war camps look like holiday camps?
When the train came, it was to a different platform than the one I'd been waiting on, so once more, I had to lug my case on wheels up the steps and over to the other platform. Got on the train, got to Brockenhurst and had to wait there for another half hour or more. At Southampton, they'd announced that if we were getting off at a number of stations including New Milton, we must travel in the first 4 carriages of the train. Now, I will admit that I have some foggy mental arithmetic issues due to my fibromyalgia, but I know I can still count to 4. So I counted the carriages and got in the 4th one, but when we got to New Milton, even though I was in the 4th carriage and there was platform beneath the door I was at, they did not release the doors on my part of the train. I couldn't get off and had to travel on to the next station. Once more, I lugged my heavy bag on wheels up over the station bridge to the other side (and back again and you would not believe the level of pain I have in my neck and shoulders today), only to find that there would have been another hour wait for the next train going back in the opposite direction, but it didn't say if it would be stopping at my station or not. So I had to call a taxi to come and find me and take me home.
It finally took 3 hours to get home the mere 20 miles from Southampton to New Milton. The whole fruitless and painful expedition cost me £15 in trains and £35 in taxis. Today, I was in too much pain and was too exhausted to write this really, but the experience was so awful, I just had to exorcise it.
No, never again. I really would rather die.
He's says he's going to write to my GP recommending that we have one more go at doing the smear and swabs in the surgery and, if it still proves impossible, leave it. Given what I've now seen, I prefer his option.
Well, there's a chance that the fibroids will reduce all by themselves once I'm through the menopause and a good chance that the rest of my symptoms only exist because of the fibromyalgia, ME/CFS and/or IBS. My research suggests that even if there is a polyp, it may also regress on it's own; at 52, I don't think I'm bovvered about miscarriage risks and only 0.5% of polyps prove cancerous. If I'm wrong, I'll die, which, given the quality of life I have, is no great worry.
That's a risk I'm prepared to take: being buggered by a NHS hospital - with the risk that it could reduce my quality of life beyond my current 80% incapacity to needing 24 hr care - is not. And with that, I left. All I wanted was to get home and back to bed. Of course, the nightmare day couldn't end there, could it?
Because of the (cough) engineering works (train derailment) the night before, the trains were still in chaos and only just getting back to full running. Some trains had been cancelled, others were running short or late. When I got back to Southampton station, I had almost an hour to wait for the next train that would be stopping in New Milton, so more sitting on hard benches in the cold. Although, the cold, hard metal station bench was MUCH more comfortable than that hospital chair! I'd had a chat with the guy on the ticket barrier to double check the time of my train. I mentioned it, he confirmed that's what he'd heard, but said they aren't allowed to use the word "derailed". Yes, boys and girls, the British public has "officially" become such a bunch of "pussies" that we cannot withstand the shock of hearing a word that says "carriage wheels left the tracks."
On the other hand, we're expected to calmly undergo surgery in ill-equipped hospitals that make former prisoner of war camps look like holiday camps?
When the train came, it was to a different platform than the one I'd been waiting on, so once more, I had to lug my case on wheels up the steps and over to the other platform. Got on the train, got to Brockenhurst and had to wait there for another half hour or more. At Southampton, they'd announced that if we were getting off at a number of stations including New Milton, we must travel in the first 4 carriages of the train. Now, I will admit that I have some foggy mental arithmetic issues due to my fibromyalgia, but I know I can still count to 4. So I counted the carriages and got in the 4th one, but when we got to New Milton, even though I was in the 4th carriage and there was platform beneath the door I was at, they did not release the doors on my part of the train. I couldn't get off and had to travel on to the next station. Once more, I lugged my heavy bag on wheels up over the station bridge to the other side (and back again and you would not believe the level of pain I have in my neck and shoulders today), only to find that there would have been another hour wait for the next train going back in the opposite direction, but it didn't say if it would be stopping at my station or not. So I had to call a taxi to come and find me and take me home.
It finally took 3 hours to get home the mere 20 miles from Southampton to New Milton. The whole fruitless and painful expedition cost me £15 in trains and £35 in taxis. Today, I was in too much pain and was too exhausted to write this really, but the experience was so awful, I just had to exorcise it.
No, never again. I really would rather die.
