“ A condition whereby the immune system starts to attack itself, resulting in painful skin lesions, mouth & throat ulcers and generalised illness. „
WARNING: This review is very long, as it's a weird illness, and contains direct and graphic descriptions of the female genital region, plus various bodily fluid emissions. Please don't read if you are upset/offended by such things....thank you!
On 9th July 2010 I was in the garden, hacking down stinging nettles with my long handled shears. It was a very hot day and I was wearing just a thin Indian cotton skirt and a very skimpy bra - no knickers - and apart from a slightly snuffly nose due to the pollen flying around the air, I felt absolutely fine.
Within just a few minutes, I suddenly felt as if all my energy was being drawn out of me....weak and light-headed, then I sensed something running down the inside of my legs. Concerned, I hot-footed it indoors as fast as I could manage, and as I entered the kitchen, I felt a searing, burning pain at the tops of my legs, just where they join up with my naughty bits. I dashed to the bathroom and attended to whatever it was that was running down my legs - it appeared to be a copious and not very nice-smelling vaginal discharge. The skin pain at the tops of my legs was getting much worse, as if somebody was holding a blow-torch against the area. I looked down to see what on earth was happening, and the whole region of skin had turned an angry, bright red, with these little raised purple bumps that were growing fast....I honestly could SEE them growing.
I bathed the area very carefully in cold water - it was agony doing this - and I gently spread a thin layer of Sudo Cream over the rapidly spreading purple bumps and spots, hoping its antiseptic properties would cure the problem. Not so! In agony, I struggled to the living room, and found that I couldn't bear to sit down or even have the very light Indian cotton of my skirt resting against where this still spreading rash was. Then, I had the shock of my life. I examined the area once more, to see that the purple/reddish spots had mutated into something awful...the tops of my legs were now covered with massive blister-like lesions which appeared to contain yellow pus, and some of them were bigger than your average-sized Malteser. Clustered together in these horrible cauliflower-like lumps and emitting a foul smell which made me want to retch, this latest development at the tops of my legs terrified me, so I got straight on the phone to my GP. Luckily he had an appointment free for 30 minutes later, so I called a cab (as it had got to the point where I was in so much pain I could barely walk). As I sat in the waiting room, I was almost screaming with the pain.
When my GP examined me, even he was unable to hide his shock and surprise. He gave me an internal examination, and told me I had a very severe case of thrush. He prescribed Canestan in the form of cream, tablets and a pessary, which I got from the chemist opposite, and he also advised me to take frequent, tepid baths containing lots of either salt or bicarbonate of soda and to make sure I dried myself properly afterwards.
I obeyed my GP's instructions for two days, yet the condition continued to get worse...these awful yellow lesions were not spreading outwards, but were growing in size to the point where I feared they would burst, and the smell was truly nauseating. I still had what I believed was the vaginal discharge, and I was having to permanently wear sanitary and incontinence pads which would become soaked through in minutes. Sitting down was so very, very painful, that I spent most of the time standing up, and was unable to sleep at all.
Two days passed, and I was in such terrible, excrutiating pain, that I phoned my sister and asked me if she'd take me to the A&E department of my closest hospital, which is Southend-on-Sea University Hospital. On checking into casualty, I was seen quite quickly and the staff who attended to me were, similarly to my GP, visibly shocked at these awful, huge yellow lesions infesting the tops of my legs and my nether regions. A blood test was taken and I had to give a urine sample - the urine was bright orange, thick and cloudy, and I was immediately told that I had a urinary infection which possibly was unconnected to the yellow blistery rash. I felt very weak and was in so much pain I could hardly think straight, then a nurse informed me that they wanted to keep me in hospital for observation.
I was taken in a wheelchair up to a ward, given very strong painkillers and an intravenous drip which pumped powerful antibiotics into my system for curing the urinary infection. The following day, I was taken to see one of the dermatologists, who diagnosed a fungal infection, saying that I didn't actually have thrush, but a different fungal infection altogether which was very severe. She gave me a tube of cream and told me to shower three times a day, and after each shower, to liberally massage the cream into the affected area - I did this, but the condition showed no improvement at all, and I was still in a considerable amount of pain, despite being on large doses of codeine.
The next day was a muddle of various internal, gynaecological examinations which were painless in themselves, but very intrusive, a biopsy whereby a portion of one of the horrid yellow pustules was taken for analysis, and various other examinations to determine my heart, lung, liver and kidney functions, plus a test to see if I was suffering from late-onset diabetes. The verdict from all these tests was that all my organs were fit, present, correct and functioning beautifully, plus there was no sign of diabetes, and the initial diagnosis of a severe fungal infection was upheld. For some reason - maybe because that's the only place where there was a spare bed (they needed the one I was occupying for someone else), I was moved to the gynaecology ward and given a private room with my own en-suite bathroom, internet and phone access over my bed, and barrier nursing because I was believed to be infectious.
I was in hospital for about ten days, yet there was little or no improvement to the condition at the tops of my legs, and two days before I was discharged, my whole scalp broke out in the same type of yellow sores that were at the tops of my legs. It then dawned on me that...OK I had a fungal infection....don't antibiotics cause fungal infections sometimes, and make existing ones worse? Odd that the weeping sores hadn't been on my scalp at all, until after I'd had a hefty dose of IV antibiotics pumped through my system - but, read on!
For some reason, I was discharged, given some more cream and a supply of strong painkillers, and told to just keep having showers or baths and massaging the cream over the tops of my legs and onto my scalp, and that in time the condition would clear up. I was also given an appointment to attend as an out-patient, whereby my progress would be assessed, and a decision would be made as to what to do next.
The following few days were spent at home, and my sister was an angel....running all sorts of shopping errands for me, stocking me up with food, making sure I had plenty of tissues, toilet rolls etc., as the sores on my head were itching like mad and weeping this foul-smelling gunge all the time. I had to keep mopping the fluid up with tissues and loo-roll, and believe it or not, I was filling about three plastic carrier bags (for disposal purposes) of used tissues per day and I was still leaking from 'down below', thus still having to wear sanitary and incontinence pads. I was unable to sleep in bed at all. On my first night home I tried, but the sores on my head just were continually weeping, and all the disgusting fluid was soaking into the pillow, smelling foul and making me feel sick - I ended up throwing the pillows away, and trying to sleep sitting upright on the sofa with my head suspended in mid-air. I got very little sleep due to the continual seepage of fluid from the sores on my scalp which I had to keep mopping up, and I was still copiously experiencing what I believed to be a vaginal discharge. Also, the lesions at the tops of my legs hadn't improved at all and I was still, despite the tablets, in excrutiating pain. Aside from all that, another symptom made itself very painfully present......the inside of my mouth and my throat broke out in a mass of huge ulcers which made speaking and eating almost impossible.
My sister took me to the hospital for my arranged checkup (it was about a week after I was discharged), and this time I saw a different doctor. She told me that if it was a fungal infection I was suffering from, it would have vanished by now, and being as there was no improvement at all in my condition and that it had spread to my scalp, she wanted me to return the following day to see a skin specialist who she said is one of the country's top dermatologists, and she also advised me to bring some bags packed with everything I'd need for another spell in hospital, as she felt he'd almost certainly admit me again. Her last piece of information was that what I'd believed to be a vaginal discharge, wasn't at all....it actually was the yellow spots at the tops of my legs seeping all this gunge everywhere.
Still leaking all over the place, still feeling weak and tired and still being in an unholy amount of pain, I returned with my sister the following day to see the country's top dermatologist. He immediately took another biopsy, told me that although it would be possible for me to manage this illness at home if I really didn't want to be admitted, he would prefer it if he could keep me in for ten or so days for further observation and plenty of rest, plus a strict regime of drug and emollient therapy. He told me that unless the biopsy and any of the endless blood tests I was about to undergo indicated differently, I'd contracted a somewhat rare, non-infectious condition called Pemphigus Vegetans. He went on to explain to me that all strains of Pemphigus are where the immune system sort of goes into overdrive, reverses its functions, and begins to attack itself, and that he was 99.9% sure this was what I'd been...and still am....suffering from.
I was taken to a ward where I spent the next ten days, following the dermatologist's programme for what he told me would be a slow, but hopefully sure recovery...warning me that first we had to get the condition under control, and thereafter, it would be a simple case of one day at a time, and that it could be some months before the illness completely leaves me...he also said that once cured, the condition can keep recurring, but if it did with me, at least next time I'll know what it is and can receive the correct treatment as soon as the first symptoms appear.
My ten days in the ward were spent sleeping a lot during the daytime and being kept awake by the night staff crashing their trolleys into brick walls, plus listening to wails and groans of patients in other beds who had some pretty nasty illnesses. I was classed as self-caring, and at times felt a bit of a fraud - I felt nowhere near as ill as most of the other people in my ward truly were - I was, even though very painfully, able to take myself to the loo, able to bath myself, able to walk along the ward unaided etc., so I didn't feel as ill as the others. I stuck to a daily regime, on the dermatologist's orders, of three baths a day, each containing a dissolved permanganate tablet and a good slug of Hi-Bi Antibacterial Wash - they both turn the water red, and the bath brown! I had to stay in each bath for at least 30 minutes, dry myself thoroughly afterwards, then apply liberal smearings of Dermovate cream to the sores, then douse myself all over anywhere on my body where there was even a tiny sign of a rash, with Dermol anti-bacterial soap substitute/moisturiser. I was given a large daily dose of steroids, drugs to arrest my immune system to prevent it from continuing to attack itself, and as many painkillers as I needed, plus three different types of mouthwash to ease the pain of the ulcers all over my tongue, gums and in my throat. In total, I had 28 blood tests, all of which seem to have proved that there's nothing seriously underlying that's wrong with me....and, at long last, I ceased to need sanitary/incontinence protection as the leaking yellow pustules turned into just large sore areas where the now discoloured skin continues, albeit slowly, to heal.
As we entered August Bank Holiday weekend, the staff on the ward felt that I may be ready to go home, and the dermatologist agreed, so long as I was able to continue with the same treatment by myself - the three baths a day, appropriate painkillers as and when, plus manage my own steroid intake, reducing it gradually as advised. I agreed to this and because nobody was available to take me home, the hospital arranged for a taxi to chauffeur me.
Since I've been home, I've been continuing the drug, creams, mouthwashes and red bath treatment. My scalp is now totally healed...clear and sore-free, which truly is a relief. All the huge yellow pustules at the tops of my legs have gone, and left me with a still very painful, but much healthier large area of skin which is damaged, but with constant moisturising from the Dermol, should one day return to almost normal. I still have slightly infected areas under my arms, at the back of one shoulder, a little inflammation at the back of my neck and around my bum, but I'm light years better than I was right at the beginning, when this strange illness decided to invade my body. I have some days which are better than others, but averaging it out, it's definitely now and onward and upward situation.
I do get tired very easily and am still not up to much due to the tops of my legs being very sore at times - although dramatically improved - and the mouth ulcers continue to be very painful although they are slowly going down, but I am getting a little stronger each day.
Of course, as soon as I got home (during my second stay in hospital I had no internet access), I wanted to switch on the computer and Google Pemphigus Vegetans to find out more details about what I have been suffering from.
There are quite a few websites - some more informative than others, and quite a few of them far too technical and way above my head - which describe the disease. It seems that often the root cause is not known, but the illness can occur as a secondary in people who have underlying conditions such as some cancers, lupus, diabetes...or it can be hereditary. I can't see that it's hereditary in my case, as I'm certain that nobody in my family has ever suffered from anything even remotely like this. As yet, I don't know what has caused me to contract Pemphigus Vegetans, but I might find out on 11th October when I return to hospital for my next checkup. As for the results of the outstanding blood tests, nothing dire has yet been detected. I'm now just taking one day at a time, and have adopted a whatever will be will be attitude. After having read some case notes on the internet of people who have suffered this illness, I am of the understanding that my own case has been fairly mild in comparison...and I consider myself fortunate that the third dermatologist I saw was familiar with the condition and was able to make a speedy diagnosis. I don't blame anyone for the previous mis-diagnoses....simply that it is a rare illness, and they are I'm sure more difficult to pinpoint than something which is more commonplace.
Some of the images on Google of people suffering from Pemphigus Vegetans are truly awful and I can say that my own plight has been far less severe than theirs. Mine was confined to limited parts of my body, whereas I've been viewing photos of some poor individuals who truly are totally covered in these awful lesions...not a single inch of their skin is unaffected. I feel I've had a lucky escape here.
It seems that the most prevalent symptom is the mouth and throat ulcers and hoarseness of the voice, yet with me, they came later along with the scalp lesions...my first symptom being as described at the beginning of this piece of writing....the horrid yellow things at the tops of my legs.
On a final and I hope very positive note, this experience for me has been a wake-up call and has given me a lot of food for thought. Though I had a couple of serious illnesses in childhood, I've always been disgustingly and robustly healthy throughout my adult life, but definitely haven't looked after myself as well as I should have done. I'm now hurtling towards my 60s faster than I'd like, and since I've been home from my second stay in hospital, I've endeavoured to make life as comfortable for myself as I can.
I've had lots of hours to spend re-thinking all sorts of things, and I've been taking a much more responsible attitude towards my own well-being and the way I care for myself on a daily basis. I'm eating much better and healthier than I've ever done and feel wonderful (underneath the illness) as a result. I'm making sure I have my five a day, and actually finding that it's easy to eat far more than the recommended five! I'm resting when I want to instead of pushing myself hard to stay awake when I want to sleep....I'm pacing myself, and if I find that I've inadvertently overdone it when I've been out shopping or something, instead of ignoring the exhaustion, I'm going with it and sleeping, resting, nurturing.
As a result, I feel much more relaxed inside of my mind, and it has extended itself over into my philosophy of life, in that I've suddenly become a lot more tolerant of where other people are coming from....a lot less irritable and much more inclined to hand the problems of antagonistic individuals back to them, rather than take them on board myself. If I'm out and I feel tired, I shall lie on the pavement if I want to and not give a damn what anybody else thinks. Who are they to judge me anyway? If I want to go out without knickers or without a bra and let my saggy boobs drop down to my belly-button, who cares? They're only bits of flesh! If people want to give me weird looks, let them! At least I'm providing some entertainment! That's pretty much the gist of where my brain is now travelling as a result of having this weird illness - which I'm told if left untreated for too long, can be fatal. I doubt if it's fatal in my case due to my record of improvement, but at the end of the line, if it turns out to be, then so be it. That sounds very morbid, but I'm saying it from the point of view of being realistic about life and its limitations.
Of course I shall be very pleased if when I go to the hospital on Monday and I'm told that I'm fighting fit....but if I'm told anything to the contrary, I truly now feel strong enough to deal with whatever I hear.
Well it's over and out time now, and thanks for reading this rather self-indulgent ramble. I truly hope that none of you out there ever get this bizarre illness, but if you find yourself suffering from the above symptoms, please get help as quickly as possible, as the faster you're correctly diagnosed and given the proper treatment, the less damaging the whole outcome will be.
Thanks for reading!
~~ Also be published on Ciao under my CelticSoulSister user name ~~