About Me

The Journey

I've mentioned a brief summary of what's going on with me in the blog header but I'll use this little section to go into a bit more detail about each condition. I'll start from the beginning.

Polycystic Ovary Syndrome (PCOS)

PCOS was my first diagnosis at the age of 14. It seemed that, for as long as I can remember, I've had tummy trouble and abdominal pain. It was often put down to a nervous tummy and that's partly true. I did tend to get stomach aches at events but they were a totally different sort of pain in a different place. I'd often suffer with immense stomach cramps after eating a meal which wasn't all that pleasant. My first real scare though was at school one day when I was carrying my lunch tray into the dining room. I felt this pang of deep pain in my tummy. I tried to ignore it, sat down and started to eat. I couldn't though, the pain got worse and worse and started to spread down my leg and I thought I was about to vomit. I left my lunch and went back to our common room, by then the pain had got past the point of bad pain, I thought something had exploded. All I really remember now is laying down clutching at my tummy, half screaming and half crying with the school nurse trying to work out whether it was a miscarriage or not. Well there wasn't any chance of that, but they had no idea what it was but nothing made the pain any better. I don't really remember much more from that day.

A while later I had an ultrasound scan and there they were, cysts all over my ovaries. The consultant told me it was PCOS and that he could do a laparoscopy to sort them out. Once that was done we thought that was the end of that but 6 years later (at the age of 20) I was back with the consultant being shown that they had come back again. The weeks/months leading up to this I'd been very ill again with the symptoms of severe IBS and a few more attacks of the indescribable pain in my abdomen. Once again, I had the laparoscopy with 'ovarian drilling' (sounds lovely I know) and once I was patched up again I returned to work hoping they wouldn't be back anytime soon.

ENDOMETRIOSIS

Things were okay for about a year or so. I remember it being just after my 21st birthday and I was living in London. The food trouble started again (IBS), only worse. Most things I would eat would cause almost instant, crippling stomach cramps followed by nasty diarrhoea. These episodes basically felt like my tummy was burning and being ripped apart from the inside with an acidic cheese grater. The pain spread from just under my ribs, through the base of my spine and down my legs. If it happened while at work I would just cry and curl up on the floor of the office toilet with my coat and hot water bottle for hours. I even remember being on the floor of a Victoria Station public toilet in agony, but there was nothing else I could do. Food became impossible so my GP put me on food drinks and referred me on to various specialists. I ended up losing over 3 stone. I had to move back home but continued to try to commute to work. This became more and more difficult as I'd be glued to the toilet for so long. Sometimes the pain would start on the train and utter panic would set in because once it started there was only a very short period (30sec-1min) of time before needing to be in a bathroom. I would often be curled up in the corner seat of the train crying due to the pain and praying that the journey would be over. Crapping yourself in front of a train full of commuters doesn't bare thinking about. Though, when you have this, you have no choice. Car, bushes even plastic bags.. You have to do what you have to do and I can't explain how lonely, humiliating and demoralizing this was.
I really didn't understand what was going on and why it was this painful. My tummy felt like it was bursting. Painkillers were mostly useless at that point so you would literally have to burn your tummy with a hot water bottle to get any amount of relief. This went on for years.

I saw a psychologist who told me it was my brain was creating the pain because of anxiety, a Gastroenterologist professor who told me it was anxiety and depression, a pain therapist who told me that if I imagine the bowel to be working smoothly the pain would ease, another Gastroenterologist who told me this was 'nothing physical' (endo does not always show on scans). Let's clear one thing up that the Dr's couldn't grasp, I was depressed because I was in constant, horrible pain that I could not control, not the other way around! Scans and excruciatingly painful, humiliating procedures that revealed nothing. I tried everything the Drs asked me to do.

They pumped me full to the brim on various antidepressants, anti-anxiety medication, anti-spasmodics and CBT courses. I think at one point my prescription had reached about 9 different medications. Nothing helped. In the end I had tried everything to carry on working but it was impossible as most days I could not leave the house. I now utterly hated my life and I couldn't cope with the pain day and night. That was it, there was nothing more to try. I had to accept this was my brain doing this.. what more could I do? Dr's tell you never to do this but well, if I hadn't, my life would be very different. I asked Google.

The very first thing that came up was Endometriosis. At this point I had never even heard of it. It was only years later I found a post-it note with 'Endometriosis?' on the back of a letter from the gynae who performed my lap at 14. I had a read or endometriosis.org and it all sounded scarily accurate. I ask my GP if she would refer me back to a Gynaecologist. By this point my GP is incredibly sympathetic and agrees to do so. Soon after I see a female gynae consultant who looks at the information I have, listens to my symptoms and tries to do some examinations but this proves too painful, so that's scrapped. She says 'I don't think this is endo or PCOS but we'll have a look', and suggested that it's a Gastroenterology problem. Again, I go for a ultrasound and by now, I can recognise the cysts on the screen.

By this time I am 25 years old. Another laparoscopy was done to sort our the PCOS (again) and after four years of being told by doctors that the pain is in my brain, Endometriosis was diagnosed. On waking up from the anaesthetic I was just shaking violently and in pain. My other operations hadn't felt like this. I was sent home, the recovery was very slow and I was in bed for weeks. I explained all the problems I had in a post-op consultation but was told that there was only a little Endometriosis, nothing to worry about and the pain wasn't related. She put me on the pill, even though I said it gave me migraines she said it's the 'only treatment plan'.

The pain in my stomach started again only this time it had reached a new level. I remember yelling to my parents not to call an ambulance as how the hell would I get away from the toilet, take it with me? I thought it might stop, or calm down but the ripping felt worse and worse. Absolutely nothing helped and I was on the toilet screaming. I remember thinking 'Oh my god, I'm going to die like Elvis on the toilet!'. I honestly believe that I'll never feel anything that painful again in my life, I hope not at least. Dad said we have to go to hospital, so we go. In A&E they give me morphine - oh my goodness it was amazing, I cannot explain the relief.

The female consultant who had performed the operation came along and told me that the pain would have nothing to do with Endometriosis or the operation and that I should go back to Gastroenterology. Where have I heard this before? The pain didn't get much better and neither did the situation. I could still hardly walk and spent most of the time in bed.

The Dr's seemed to have dismissed any responsibility so we expressed our annoyance to the hospital who arranged a meeting with the matron and consultant. The consultant turned up late and the matron didn't turn up at all. The consultant explained again that she believed it was Gastroenterological, so I asked her if she'd checked there was no endo on the bowel. She explained that it wasn't possible to do that without performing an operation that would open me up from rib cage to belly. She said she would order a CT but there would be a lot of radiation. I don't really understand.. if Endometriosis didn't show up in scans before, why would it now? So, we waited.. Not really knowing what to do. I was stuck right back at the beginning again.

A short while later I was contacted by a lady via an Endometriosis group who urged me to go and see her Gynaecologist who was apparently an endo expert. That message from her really did change my life, thank goodness! I got an appointment and it was like a breath of fresh air after 4 years of soot. He seemed to know my symptoms before I'd even finished explaining and he could feel that my organs had been fused together. After yet another laparoscopy he explained that the Endometriosis had spread all over my abdomen and bowel, my uterus was fused to my bowel with scar tissue/adhesions and the bowel had been hitched up either side with scar tissue which was 'strangling' it. Basically when I was trying to eat, it was all trying to pull apart. This doctor was, and remains to this day my miracle doctor. This was all done without having to cut me wide open as the previous gynae had insisted. It makes me ill to think of what state I'd be in now if I had believed what she was saying. I was on my feet a couple of weeks after the operation. It took quite a while to manage the general pain but over the months that got better and better. I was prescribed Danazol, Tramadol and Codine with Amitriptyline to work in conjunction with the mirena coil (now changed to depo injection) for longer term treatment of the pain and control of the Endometriosis.

So the lessons learned from this:

1. It wasn't anxiety! This appears to be a Dr's general diagnosis if the answer isn't immediately obvious.
2. Sometimes there are doctors who really don't know what on earth they are talking about regardless of rank. Covering their own back is more important than actually listening to the patient and assisting with a diagnosis.
3. The medication regarding anti-depressants were irrelevant and should not have been taken.
4. Looking on the Internet for answers can be a life changing experience, regardless of the bad press it gets from doctors/sheep. This could be because it allows patients to educate themselves about conditions the Dr isn't even aware about. We all know why it's bad but anyone with a small amount of intelligence or sense can weed out useful information from ill people using forums to vent their frustration.
5. MOST IMPORTANTLY: There is hope. There are real specialist doctors out there with a huge amount of skill. Finding them may be the hard part but try not to lose heart if you truly believe you are being fobbed off.

There are good days and bad days still but each morning I wake up and I'm so so grateful that I'm not having to sear my tummy with hot water bottles, dosing myself on tramadol and keeping spare clothes and plastic bags in the car.

FUNCTIONAL NEUROLOGICAL DISORDER

Towards the end of the year, particularly in the evening, I would get the sensation of a lump behind/above my throat. It would kinda provoke a choking cough which would sound rather horrible but it didn't hurt, it was just annoying. I ignored it for a few months but just before Christmas one night I was on a phonecall when all of the sudden the pressure of that 'lump' got much worse and I couldn't make a sound. We went to A&E and the Dr there told us to go to a see a neurologist as soon as possible as chiari malformation had been marked on a scan from 2007. We got this checked and the neurologist said that going by today's measurements, it wasn't classed as chiari (2mm out). Yet, he didn't show or explain to use the scan of the neck he'd requested.

About a month later the pressure had got much greater. I began to get vision blackout and head rush that almost made me fall over every time I stood up. I would end up stumbling, falling, losing coordination and walking into door frames which was quite odd for me. A few days later in the evening I started to feel a tremors in my arm, then an overwhelming feeling of nausea. Went to my bathroom and noticed my vision was going in and out of focus. I can't really describe it that well but I knew something was very wrong. I went to try and communicate to my Dad that we needed to go to hospital but as my parents were grabbing all their bits my vision went all funny, like zooming in and moving away at the same time. Then and type of hair bubble feeling happened at the back of my neck and I collapsed. I don't remember much, people around me telling me things and I remember thinking 'of course I can get up and move' but nothing happened.Then in A&E having my clothes yanked off, being asked things that I couldn't answer, people moving around me the whole time doing some kind of assessment. They took me for a CT but said to me there was no clot yet they said I was a good candidate for thrombolysis. We had to sign something but the risks were horrible. On one hand I'm being told I'm having a stroke and this could help, on the other it says there is a relatively high risk of death or internal hemorrhage. They said there wasn't much time and I was too scared to decide so my Dad helped me, he spoke to the neurologist and thrombolysis was the best option.

Any neurologist I've seen since tells me it will have been a placebo effect, yet in my heart and mind I know that it can't have been. The drug was set to inject at intervals and I would feel this cold sensation go up the back of my neck and for a short while I would have my voice back, loud and clear. I would indicate to my parents when I would feel this and it would correspond with the time that the injection was going in. It was defined and felt like something was being pushed out of the way. No matter what I said about my neck though the neurologists over the next few days ignored that completely. Who knows, perhaps it was placebo or perhaps it wasn't. The level of competency shown to me over the next few days didn't instill any confidence in the doctors that had control over my discharge forms. Anyways, that's a separate story.

I left 5 days later with the diagnosis of 'functional stroke & FND' dianosed on the paper by a Dr I had never met and who didn't even work in that hospital. How were me and my family supposed to believe this?

We went through many doctors and many tests. Any tests coming back positive were dismissed by the consultants and one thing we learned is that it seems impossibly hard to get an accurate consultation letter. I tested positive at the time for Antiphospholipid Syndrome/Hughes Syndrome, yet the consultant neurologist said this was perhaps a mistake and to re-test later.. He didn't. He also said they would do nerve conduction tests.. he didn't. The consultant letters became like chinese whispers and it just became ridiculous.

I recently saw another neurologist who told me this was FND. Telling me it was very very serious and I've had it too long to be able to do anything about it myself and I could soon end up disabled. She didn't know who to refer me to and stated that I'd need the top neuro-physiotherapist to help. However she referred onto two people who worked in the same private clinic as her, an osteopath and a hypnotherapist (she said CBT would not be effective) and assured me my insurance would cover it. She stated my brain and all tests were clear - even though she had seen no MRI, clinical tests or even the referral from my GP. I was told by her that if I didn't accept the diagnosis, I had no chance of potential recovery. So when I got home it hit me and I just cried and cried. Everything I read was awful but at least I could see people going through similar stuff. Maybe at last there is some way to fix myself? I tried my hardest to come to terms with it all and accept that this is what it was.

When we received her consultation letter it was full of mistakes and inconsistencies. On finding out that my insurance would not cover her referrals I wrote to her asking what I should do... and I heard nothing back.

Who are we meant to trust? As it stands I'm just so confused. There are some last things to try but aside from that, I don't really know what to do with myself! It feels like I'm falling apart and I don't know how to make it stop.

Raynaud's

I'm told this condition is common. Prior to 2011-12 I always disliked the cold, my circulation wasn't great but at the same time it really wasn't that bad. I felt the cold, yes, but nothing like now. Following my attacks in 2012 the cold made everything 10 times worse. It was extremely uncomfortable and increased the severity of the symptoms I was experiencing. I began noticing my fingers and toes becoming icey cold. Sometimes I'd end up with one white, freezing foot and one swollen and red one. The same with my hands, though they often just became painfully cold all day and night. There was little I could do to help apart from buy the thickest jumpers and blankets and warm myself with anything possible. Even though I'd taken pictures of the colour changes, explained the symptoms, it was mostly ignored or passed over by the consultants at the time, even the vascular specialist.  

It took 9 months but finally in November 2012 I had been given Nifedipine to relieve my symptoms, the first actual treatment since my very first attack.

The consultant at the time still wished to attribute my other physical/neurological symptoms to 'anxiety'. No surprises there. While he was doing the physical examination he also diagnosed Hypermobility Syndrome. So thus far we have PCOS, Endometriosis, Raynaud's and Hypermobility Syndrome.. yet.. It's anxiety.

Just a thought..

"Raynaud's phenomenon includes Raynaud's disease (also known as "Primary Raynaud's phenomenon") where the phenomenon is idiopathic,[1] and Raynaud's syndrome (secondary Raynaud's), where it is caused by some other instigating factor, most commonly connective tissue disorders such as systemic lupus erythematosus." - Wikipedia

And finally.. Seronegative Antiphospholipid Syndrome

So it's now October 2013 and I've finally got round to updating this section. I made a post earlier in the year about my trip to LLC. I've been on the Clexane injections for three months now and the improvement is incredible in comparison to before.

My consultant, who I now see long term at St'T's, believes my symptoms are attributed to seronegative APS, though I noticed on my form for the pharmacy he wrote down SLE also, so I'm a tiny bit confused, however, that doesn't matter. What matters is, is that I have a competent doctor who seems to care and has given me medicine that has changed my health condition to something much more bearable.

So basically, all the things I was told by the consultant neurologist above was a load of utter bollocks. It's sickening to think that had I listened to her I wouldn't be having the medication I need.

My consultant now, PK, tells me that with seronegative conditions you can have A, B, C (physical symptoms) and yet because you don't test positive for D, you don't 'qualify' for that condition. This is where the seronegative diagnosis comes in. My last lupus screen came back with another positive ANA, deficiency in vitD, one clear lupus test and one suspect one concerning the APS side of things.

I was recently at a medical conference, and just after the presentation regarding my 'journey' most of the doctors said that the diagnosis was clear from all the information displayed to them, including the photographs. This -same- information was given to each and every doctor I've seen regarding this condition, so why has it been so hard to get a diagnosis, even with a positive APS test right after the initial attack? It's just terrible, and I really feel for all the other people out there who are suffering and lost in the medical system just because some of these 'medical professionals' are either too lazy or arrogant to listen.

Anyway, I'm balancing all my medication now and trying to get on with things as best as possible, it's not perfect but it's a damn site better than before!

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