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 after my 21st birthday and I was living in London. The food trouble started again only worse. The pain started again only worse. Most things I would eat would cause almost instant, crippling stomach cramps followed by nasty diarrhea. These episodes basically felt like my tummy was burning and being ripped apart from the inside. I would just cry and curl up on the floor of the office toilet with my coat and hot water bottle. These attacks lasted from 1-4 hours and became almost daily. My GP put me on food drinks (which helped for a while but soon triggered the cramps too) and referred me on to various specialists to try and find out what was going on. I ended up losing about 3 stone and could only manage one sausage roll a day. By that time I'd moved back home and continued to try to commute to work. This became more and more difficult as I'd be glued to the toilet. Sometimes the cramping would start on the train and utter panic would set in as once the pain started there was only a very short period of time before 'stuff' was going to come out. 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 humiliating and demoralizing this condition was. In the end I had tried everything to carry on working but I had become mostly housebound so I had to leave my job. This in itself was a huge sadness for me as I'd worked so hard to get where I was in four years and I was happy, it was a lovely job. I just couldn't take it much more, I utterly hated my life and I couldn't cope with the pain. 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. Let's clear one thing up that the Dr's couldn't grasp, I was depressed because I was in constant, horrible pain, not the other way around! Scans and excruciating painful, humiliating procedures revealed nothing. When I say nothing, I do wonder whether they didn't actually check properly. I tried everything the Drs asked me to do. They pumped me full to the brim on various antidepressants, anti-anxiety medication, anti-spasmodics CBT courses. I think at one point my prescription had reached about 9 different medications. Nothing made the slightest bit of difference.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.
I put in my symptoms and the first thing that came up in the list was endometriosis. At this point I have no idea what it is. Have a read and it all sounds scarily accurate. I ask my GP if she would refer me back to a gynecologist, who by this point 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 is what it is (endometriosis/PCOS) but we'll have a look', suggesting that it's a gastroenterology problem. Again, I go for a ultrasound. Guess what has come back? Even I can recognise them on the screen be now. I had the sweetest doctor do the scan and I just remember him saying 'I'm sorry my dear, they're back again'. I like nice doctors. It wasn't such bad news for me, it was something that could be fixed! And it wasn't my damn brain making this up.
So another laparoscopy was done to sort our the PCOS (again) and investigate the endometriosis. On waking up from the anesthetic I was just shaking violently and in so much 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 cramps in my stomach started again only this time the pain reached a new level. I remember yelling to my parents not to call an ambulance as how the hell would i get to it, take the toilet 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 thought I would die there in the bathroom and I honestly believe that I'll never feel anything that painful again in my life, I hope not at least. Dad says I have to go to hospital so I go. In A&E they give me morphine - oh my goodness it was amazing, I cannot explain the relief.
The following days were painful but I was on the gynae ward now so I thought all would be much better. The female consultant 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? I was so upset to be stuck back in a dead end situation so I discharged myself. 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 endo 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 a endometriosis group who urged me to go and see her Gynecologist who was apparently an expert in this field. 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 over my abdomen and bowel, my uterus was fused to my bowel with scar tissue/adhesions and the bowel had been hitched up and strangled with the pelvic adhesions and there was endometriosis on the bowel. He 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 later for my sisters wedding, hooray. It took quite a while to manage the general pain but over the months that got better and better. I was prescribed Tramadol/Codine and Amitriptyline to work in conjunction with the mirena coil for longer term treatment of the pain. For about 3 months after the operation I was on Danazol but I counln't tollerate the side effects unfortunately, so came off them earlier than intended.
So the lessons learned from this:
1. NO it wan't damned 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 if they are a professor, consultant or a junior doctor. Covering their own arse is more important than the patient.
3. ALL 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? *shrug* 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 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.
Things were getting better. I had begun to look for work, applied for two jobs and luckily been offered them both as well. Then randomly things took a nose dive again.
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. It's 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.
All I want is my life back. A job, a partner, maybe even a family.. definitely a cat! I hate being a burden on my parents at 27 years old!!
I want to be me again. Hopefully one day that will happen.
**Still working on this page!**
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