Living with uncertainty

It dawned on me last night as I lay awake thanks to some pesky pelvic pain, listening to a podcast and my cat’s snores, that I have totally forgotten what it’s like not to live with uncertainty.

The uncertainty of life at the moment is really getting to people and I’ve been hearing and seeing and reading a lot from people who just cannot cope with the unknown. When will they get back to work? When can they see their family? When will they be able to go into a cafe? When can they go on holiday? When will all this end?

I get it. People’s lives are stuck in a kind of suspended animation, a lockdown limbo. And they do not know how to react to this. Nobody has lived through something like this. There are no manuals, no how-to guides, no easy-to-follow recipe. There’s no app on how to cope with this situation.

People are impatient. No one likes to have to wait. Especially when there’s nothing to distract you from the waiting. No one loves to hang out in a waiting room.

Here’s the thing though, it doesn’t bother me as much as it bothers other people. And I’m not saying this to try and make myself seem like I’m a good person. This isn’t a spiritual thing or anything. What I realised is that this doesn’t bother me as much because I’m comfortable living with the unknown.

I’m used to uncertainty. My life operates within the precincts of uncertainty. I don’t have a permanent full-time job because I can’t work full-time and I don’t know from one month to the next how well I’m going to be. I jump from one-semester contract to one-semester contract. In an optimistic move, I took on a one year contract in 2018 and ended up knackered and very ill by the time the year finished. And I only worked ten hours a week and only during term time. I’m used to saving any money I can get my hands on exactly because I don’t know how long it’ll be before I’ll earn a paycheck again. I use a very old and very slow laptop and a second-hand phone because as long as they keep working, I’m not going to spend money just to have the latest model.

Until the very end of 2019, I didn’t know if I maybe had a neurological condition that would impact my life. It was incredibly difficult to think ahead, to plan for the new year. And as soon as one question is answered, another one pops up to take its place, like a chronically ill hydra.

I know it can be difficult to suddenly find yourself asking questions that no one knows the answer to. When those questions have a very real impact on your everyday life. I remember trying to stubbornly refuse to live with the uncertainty, resolutely going ahead and doing things and to hell with the consequences. I know better now. I’m okay with the uncertainty. But it took me a long time to learn how to live with it.

It’s very strange as a chronically ill person to see able-bodied, healthy people completely freak out at living life the way that we do. To be stuck at home. To look forward to leaving the house. To miss working, socialising, spontaneity and everything else. We’re in the seventh week of lockdown now. I’ve been chronically ill for eleven years. There have been ups and downs in those years. I had a few chunks of being able to do lots of stuff (lots for me, probably not for normal people) and I had some really bad periods where I haven’t really been able to leave the house. I haven’t been able to walk around an entire supermarket by myself in about two years. I haven’t been able to do anything really without precision planning.

For a lot of people with chronic illnesses, their lives changed practically overnight.

The big question people have at the minute is ‘When can we get back to normal?’

The answer we don’t really want is that no one knows for sure.

I wish I could somehow share the secret of living comfortably with uncertainty, sprinkle out a little bit of the patience I’ve somehow acquired over the years, teach how to be alone with your own thoughts but it doesn’t work that way.

But, if anyone needs me, I’ll be listening to the Frozen 2 soundtrack as I’ve now used the phrase ‘into the unknown’ far too many times…

Being a “good patient”

I’ve been a patient, on and off, for most of my life. Nowadays I feel like “patient” is almost my full-time job.

For a long time I felt like I had to fit a certain expectation my doctors had and I suspect this is common for chronically ill folks. Throughout my teenage years when I was desperately searching for help with my periods and pelvic pain, I usually felt like I was annoying the doctors. They certainly left me with that impression. I annoyed them with my very presence. I annoyed them when I explained my symptoms. Like many other people with a uterus, I was consistently told that I was “over-reacting”.

Because I was a young girl, I couldn’t be trusted to understand my own body or judge what was ‘normal’. I argued, I refused to back down, I got frustrated, I got emotional. All of these things marked me as a problem patient. I wasn’t someone who went away. The symptoms were taking over my life and my persistence was then twisted into meaning something else. I was attention-seeking, I was a hypochondriac. I wanted more drugs. I needed psychiatric help because there was nothing physically wrong with me. These are all phrases I heard repeatedly from different doctors in different departments throughout my teens and twenties. Being overweight didn’t help either because, clearly, fat bodies were also not worthy of quality health care. Being a woman in a fat body made me feel like I was the worst possible patient these doctors could imagine.

I used to twist myself into circles to prove that I could be a “good patient”. I learned from every interaction – don’t show emotion or you’ll be written off as hysterical, don’t argue because it sounds like you’re questioning the doctor’s authority. On top of living with pain every day, this was exhausting.

Being hospitalised because of an adverse reaction to a chemical menopause at the age of 22 was the first thing that cracked my determination to be a “good patient”. I had done everything I’d been told to for almost a decade. I had got progressively worse and ended up in excruciating pain. Even then, all I really needed was apparently psychiatric help.

The first breakthrough came from being so annoying my gynaecologist wanted to prove me wrong. He eventually gave in to the idea of doing a laparoscopy when I was 23, after a decade of symptoms. On the way to theatre, a theatre booked for an hour tops, he told me to prepare myself for when I woke up and he’d tell me there was nothing wrong. When I did wake up, he apologised. My pelvis was riddled with endometriosis. I broke one of my own rules and cried with relief.

 

Armed with this diagnosis, I decided that I wasn’t going to blindly trust doctors anymore. I had understood my body for years, I had known there was something wrong, I understood far more than they gave me credit for. I was intelligent and articulate, something which I had consciously tried to suppress so doctors would accept me as their patient and not upset the power balance within a consultation. When things went wrong, as they often have, I no longer put up with it for fear of rocking the boat. I made complaints, I’m now on first name terms with managers within Trusts and members of the complaints team. Even if the situation might never affect me personally again, I can’t just leave anything for someone else to have to go through the crappy experience I went through.

Eight years after that original endometriosis diagnosis, I’ve collected conditions and diseases like medical Pokemon. I now have eight consultants and attend twelve different departments/specialities. My care is spread over two NHS Trusts. I have a rare disease no one knows how to deal with. It is up to me to keep all the plates spinning, to tell each doctor what the other ones are doing or thinking, to keep track of the tests I’ve had and the results and to monitor closely every single symptom I experience every day.

I don’t have the energy or the patience to be a “good patient” anymore. I tried it their way and it made my life worse. I thought that if I showed that I had researched things and tried to be a partner in my own care, I would get dismissed. Thankfully, only one of my eight consultants seems to think this way (still hoping for a full house though). My doctors now, from locum GPs to specialist consultants, recognise that I am not a passive voice in my own healthcare. I’m no longer afraid to turn up with a notebook of questions and research. They automatically give me copies of important results and referrals for my own file. They know when they have an appointment with me that I will be the most prepared patient they’ll probably see all day.

I’ve always been an over-achiever so it comes as no surprise to anyone who knows me that I attack organising my health with as much gusto as I did in revising for exams or studying for my thesis. On that note, it has been interesting to evaluate attitudes towards me as a patient now I have the title of Dr. before my name. It’s as if there is somehow irrefutable proof that I can be trusted, that I’m worthy of being involved in making decisions about my health.

This week I had two appointments with different departments, next week I begin a course of treatment for another condition. I have to stay on top of everything. I have a rare disease which has a knock-on effect on other things and I’m still a medical enigma that needs more investigation and explanation. I’m quite happy to continue being a “bad patient” if that means advocating for myself, demonstrating my intelligence, sharing resources with my medical team and demanding to be taken seriously.

I’d like to think there’s a warning stamp somewhere on one of my many hospital files. Be warned – this woman is a Grade A pain in the ass. And I’d be super proud of that grade.

Public Service Announcement

Some people may have noticed that (when I actually leave my house) I wear a lot of clothes, I shake and do random movements, sometimes I leave abruptly and sometimes I have a limp.

This is all down to my rare blood condition and it dawned on me that I haven’t explained it to many people so I probably seem even weirder than usual.

Basically, my blood can clot very easily when my body temperature drops below normal (37C). I also have circulation issues which mean I am generally colder than other people anyway (anyone who has ever held my hand can vouch for this). This condition is rare and I don’t yet have a treatment plan. All I can do is try to keep my temperature up which is very difficult for me.

All this means that venturing outside my house is…complicated. I have to wear lots of layers, several pairs of socks and gloves. I can look like I’m overreacting to the slightest chill in the air.

When I am cold, it is hard for me to continue to be Robyn. My mind is slow and literally all I can think about is getting warmer.

I get shakes that I can’t control. I drop things because I can’t feel my hands. My hands become very painful when they get cold.

My feet sometimes lose feeling. Usually just in one leg. It can take hours for the leg to wake up so it looks like I’m dragging my foot or limping.

I am not trying to be rude or difficult but sometimes I just cannot engage in conversation until I warm up.

Sometimes I have to leave places because I know it is too cold.

As the winter keeps on rolling, things will get worse. I am basically trying to avoid the complications of getting cold. To normal people, that might mean getting a cold or feeling sick for a few days. For me, it can mean blood clots and even a stroke. Obviously, I need to do all I can to avoid that.

 

The summer that wasn’t

Summer 2018 was going to be awesome. I was graduating (finally) with my PhD and having a delightfully relaxing few weeks with no work in my diary. I really should’ve known better…

As usual in my life, I had a lot of hospital appointments in the run-up to summer. And by “summer”, I clearly still mean the months of July and August when schools are off, even though I am a grown-up now and there’s no need to think like this anymore. In May I had three hospital appointments with three different specialities.

Cardiology finally diagnosed the heart condition that has been causing trouble for around 18 months as Inappropriate Sinus Tachycardia. My relief at finally being diagnosed was obviously mixed with some amusement that I had an inappropriate heart. So I started betablockers to try and slow my heart rate down.

Gynaecology reviewed me after two long years and ruled out that I had any cysts on my ovaries (a concern for me and my lovely GP). My gynae consultant was surprised that I hadn’t yet had the day procedure he suggested in 2016 and I’ve subsequently found out I was never even put on a list for it. Yay, another complaint to follow up. So now I am on a real list which will take at least a year.

The Pain Clinic was, as always, lovely and friendly and my favourite (not just because they have all the good drugs).

Come June, I was down to two appointments. One with an NHS cardiologist who thought my diagnosis wasn’t a real thing and suggested I was perfectly healthy. Literally the only thing that came out of the appointment was that he took me off my circulation meds as he was worried about side effects combined with the betablockers (y’know for the heart condition he didn’t actually believe I had). I mention the meds as it will become important later on (forshadowing!) Then I went to Dermatology (new! exciting!) for my ongoing problem with my feet and legs. It is very unlikely that this condition has much to do with my skin but I was referred just in case.

After this, I had the pinnacle of my summer/year/life when I finally graduated with my PhD. It was a completely fantastic day, mingled with a bit of sadness that my gran wasn’t here to celebrate with me. My mum ensured that the entire town was aware of my graduation and threw me a barn dance (yes, you read that correctly).

 

Three days after graduation, I saw Rheumatology for my blood work results and was hit with a new diagnosis of a rare blood condition. So rare my consultant has only seen one other case that didn’t have all my co-morbidities and rare enough that the closest specialist is in London. In a nutshell, my blood goes funky when my body temperature drops below normal and can easily clot which obviously increases my chances of blood clots and stroke. To make things more complicated, I already have Raynaud’s phenomenon which affects the blood supply to my extremities, making my feet and hands cold and numb a lot of the time. I had also just been taken off the medication that helped control that. The Rheumie consultant was optimistic because it was July and summer and a heatwave so there was no rush to sort out what we’re going to do about it. And yes, there were some days when I was uncharacteristically warm but alas, alack, those days are gone and here I am desperately trying to stay warm so I don’t get blood clots and die (over-dramatic much?). For anyone doubting my insane levels of coldness, just ask any of my ex-boyfriends or friends who occasionally hold my ice-block hands. I’m considering turning into Elsa from Frozen.

All of this was manageable and I was trying to get my head around all of this when I starting feeling really unwell mid-July. I put it down to being busy with my uncle over visiting and not eating as regularly or as well as usual. I was incredibly tired and in pain and generally very sick. After two weeks I suspected my gallstone Gilbert was behind it and phoned the GP for advice. At an emergency appointment, I was told to go to A&E. Ain’t nobody got time for that! I knew that if I went to A&E with abdominal pain, I’d be dismissed as a hysterical woman. This wasn’t just my over-dramatic imagination, it happened to me for years before I was diagnosed with endometriosis. Instead, I took Goliath amounts of anti-inflammatories, tried to take anti-sickness tablets and rested. A lot. I managed to stave off the worst of it and avoid A&E. I was so proud of myself and slightly smug.

Oh, how stupid I am.

Four days after being told to go to A&E, I ended up right there. Not with my gallbladder, but with chest pain. Only the scariest type of pain would induce me to go to A&E but on that Tuesday, I had no choice. I’d been there a few times last year with my heart and every time given a patronising pat on the head and sent on my way with diagnoses of “panic attacks”, “not eating breakfast” and “singing too gustily in church” (I kid you not). This time was the exact opposite. I was triaged extremely quickly, had an ECG and bloods done within 15 minutes and put straight into a cubicle. This scared me more than anything and I would not dare take my mum’s advice to try to sleep in the cubicle because I was afraid I wouldn’t wake up again. The heart condition and blood condition had somehow moved me from ‘silly little girl who doesn’t know her own body’ to ‘a very sick and deserving patient’. This past year, I’ve noticed more and more that the doctors who used to treat me with hostility at the worst and disinterest at the least, now treat me with sympathy. It’s like I’ve crossed some kind of finish line of a race no one wants to run.

Back to A&E. After ruling out a heart attack (um…they legit thought I could be having a heart attack, gulp) they then tested for a blood clot in my lungs. This was the first real indicator of life with my new blood disorder. Had I accidentally let myself get too cold? The many tests eventually showed that there was no clot, no infection but a good deal of inflammation. The very thorough doctor suspected that the inflammation from my gallbladder (in the middle of its first real tantrum) combined with the fact that my heart beats faster than the average bear meant my heart was “sensitive” and had itself become inflamed. Thankfully this was not as serious as their first two ideas so they let me come home, where I’ve pretty much been ever since.

The great plans I had to see my friends more, work on my book proposal and write more fell by the wayside as I had to come to terms with looking after my health, or what’s left of it. Sure, I made some efforts to go out – almost exclusively with my family and never two days in a row. But even these short trips to the shops or to see family left me struggling for days afterwards.

Next week I start back to work at my part-time job, substantially weaker than when I left for my summer break in June. I still don’t know how far I can, or should, push myself. And, I still don’t have a lot of answers.

So, what I did this summer was essentially, stay at home in my pyjamas, taking heroic amounts of medication. I also watched a lot of Poirot and read a lot of books about the Tudors. So, at least there’s that.

The best of times, the worst of times…

A lot has changed in my life recently.

Some of these changes were anticipated. I knew that I would eventually leave the limbo of PhD corrections and finally get to change my title to ‘Dr’. I knew that meant starting to think about what I would do next. I knew it meant a period of adjustment to whatever I went on to do. I also recognised that I would have to make allowances for myself and my health in whatever happened.

Most of the changes I never saw coming.

I didn’t imagine this time last year that I would not introduce myself as, first and foremost, an historian. Yet, here we are. I’ve just started working for a charity as a part-time development worker. If someone had told me that I’d end up working for Girlguiding – me, the woman who has been in Girls’ Brigade for 27 years – I’d have wanted whatever wacky juice you were taking.  Yet, here I am.

I had an inkling that I needed a break from GB. The only thing that kept me was the amazing group of girls that I’ve witnessed growing up. I couldn’t leave them in their final year. I used this as a reasonable justification for coming back. Then, I started losing sight of that and thinking that I wouldn’t be me if I wasn’t a GB Officer anymore. How could I leave? The situation made it clear that I needed a break and that it should be now. But, to go from a lifelong GB girl to working for Girlguiding? Nobody saw that coming. And yet, it seems like a brilliant fit. The issues facing both organisations are much the same, my experiences can only help and, most important of all, it is something I am passionate about, empowering young girls and women.

I also didn’t see it coming that I would freak out over my health. But, obviously, I did. I’ve had heart problems for over a year and been to A&E on three separate occasions with chest pain. There have been a lot more instances of chest pain but there seemed little point to continually go to A&E when each visit seemed to mark me more and more as a hysterical woman.

It’s not that I’ve prided myself on how I cope with my health. Some days I would give anything to just have a normal, functioning body. But I recognise that my life is impacted by my health and I’ve tried to keep going as best as I can. In general, I am quite a positive person. I don’t feel it at the minute but I usually am. I’m the person who can tell you all about my latest hospital escapade with a smile on my face. I’m the woman who can make endless jokes about my conditions. My crappy health has, for better or worse, made me who I am.

I had a heart monitor on last week to try and ‘catch’ one of the episodes of tachycardia I experience almost daily and therefore diagnose what’s going on. I know that logically it will be something easily treatable, something I will be able to manage. But, when I took off the monitor after 72 hours, I couldn’t be logical. I was angry that I had to work out how to sleep with a box on my chest for three nights. I was angry that I had to go through something that I shouldn’t have had to go through. I was angry that at 29 my body seems completely and utterly unable to work the way it should.

Working my way through these feelings is tough. My brain knows that I should be grateful for the heart monitor and that it will hopefully provide some answers. My heart cries because I cannot eat breakfast without my pulse jumping to 150. My brain argues that I have a lot to be grateful for. My heart yearns not to have these burdens which have forced me to be “strong”.

It’s a lot for one person to bear. Working pretty much independently and spending the majority of my time alone makes these things even harder. I was so excited to finally be getting my heart monitor. I had been waiting for it since May and had built it up to be the magic answer to what was going on. I hadn’t prepared myself for this confusing emotional reaction.

Of course things change. You don’t need a PhD to realise that. But when I thought about my health changing, it was always improving, not declining.

It feels like so many things are changing right now. I’m still figuring it all out. Maybe it is time for some change. I’ve spent 10 years of my life at university. My love for history has not gone away, I’m still feeding that part of me by running an evening class, tutoring and marking A levels. But maybe it is a good thing that not all of my employment takes place solely within a university. Maybe it’s time to have honest and difficult conversations with myself and others about how I feel and what I want out of life. I’ve always said that my illnesses have taught me how to be patient. But perhaps, it’s a lesson I’ve learnt too well. Waiting around forever for something to happen is not always the ideal solution. Heaven knows I am a forceful and fierce advocate when it comes to chasing doctors, their secretaries and hospitals in general to get the healthcare that I am entitled to. Maybe I need to change to bring a little of that fierceness into other areas of my life. Maybe it’s not enough to wait and wonder anymore.

Watch this space…

Grieving the life I could have had

In many ways, I’m an optimist. I’m a smiler. But every now and then something knocks me a little bit.

This week I’ve been thinking about my future, applying for part-time jobs, frantically reworking my PhD thesis in its final stages. I get asked a lot what I am going to do when I finish my PhD. Firstly, submitting your thesis isn’t when its “finished”, with the exam and corrections, I have no idea when it will be truly finished and when I will graduate. Secondly, planning what to do next is hard. Not because (as some people think) I want to be a perpetual student and stay at uni forever but because I honestly don’t know what I will be able to do long-term.

In an ideal, non-sick world I’d stay within academia. I’d apply for post-docs and research positions that mean you have no security and frequently bounce around institutions – if you’re lucky enough to get them. If you’re not, you work maybe as a university tutor, trying to publish your research and filling out endless applications. But I can’t do that. I’ve realised that this career path does not suit someone like me. Someone who has so many specialists that it took years to assemble, who has a range of ongoing treatments and medications that cannot be disrupted. Someone who needs a support system to function – and I don’t mean that I’m scared to move away from home or anything but living with a chronic illness is hard y’all. I rely on my support system of my mum, my family, my friends, my church, my GB to keep me going at times when I want to give up. To leave that system would be heart-breaking and isolating – and my illnesses are pretty good at those two things already.

My back-up career plan was always teaching. I love teaching at uni. But training to be a teacher means an intensive course which even my able-bodied friends have found draining and difficult. And even if by some miracle, I survived that year, there’s no promise of a job in NI. In the alternate universe where I am a teacher, I’d be one who had to take a lot of time off and who taught sitting down clutching a hot water bottle the majority of the time. So I’ve had to say goodbye to that long-held plan.

My life has not turned out the way I thought it would – does anyone’s? By 27 I was convinced I’d have a proper job, my own house, my own yellow VW Beetle and maybe a relationship. But, I’m still at university, living at home with a VW Lupo that was once yellow but it so dirty its hard to tell with a wing mirror held on by wishful thinking. Oh, and I’m single. Not that that’s really the issue here. The issue is that my conditions – endometriosis, PCOS, interstitial cystitis (the main three) – have taken my life in a completely unwanted direction. Instead of staying on the route I’d planned, with excellent signposts and clear progression through various checkpoints, I’ve ended up on a dirt track in the middle of nowhere with a faulty Sat-nav and no idea where I’m headed. My future seems like that creepy road in Beauty and the Beast where the wolves live.

I think I’m allowed to be sad every now and then for the life I could have had. It’s hard not to be when others are doing so well in life; when friends land awesome jobs, fearlessly travel solo, advance in their solid careers, get engaged, get married, get mortgages. Everything I do is now coloured by the fact that I am not ‘normal’. I have to be extra-careful looking for jobs because I know I will not be able to stay on my feet or work long hours. I will need a boss who gets it – and I’ve been pretty spoiled by the awesome support of my supervisors at uni and the part-time jobs I’ve had here.

I’m not going to get better. Yes, I’m far better this year than I was last year thanks to my most recent surgery but I’m still not healthy. I live with pain everyday although, thank goodness, the pain is now reduced to a manageable level but still there. There’s no cure for endometriosis or interstitial cystitis. My insides will always be messed up.

It’s okay to grieve for the life I could have had. But it’s not okay to wallow. Like I said, I’m a smiler. I’m an optimist. I experienced the onslaught of fire and brimstone in my pelvis for years and still managed to get a first in my degree. I fought like a Viking for my diagnosis and I work hard every day to help my body be the best version it can be. I won a national research award despite not being able to walk without a stick and pumped to my eyeballs with painkillers. I’m finishing a PhD and yeah, it’s a bit late but so are most people’s and I’ve had friggin’ three operations since I started it. If I can’t find a job that suits me and my body, I’ll just make one. I won’t roll over and give up. But I won’t pretend that my life hasn’t changed permanently because of my health.

I’ll adapt. I’ll figure it out. I’ll succeed. I’ll smile.

Endometriosis vs Interstitial Cystitis

Endometriosis has pretty much tried to control my life for half of it. Sometimes it succeeds. Other times I’m strong and stubborn and fight back.

Interstitial cystitis is relatively new and only been around for the last few years. It’s like the needy cousin of endo and likes to play havoc on those few places in my pelvis that my endo occasionally leaves alone.

Both are chronic conditions with treatments but no cure. Both are invisible illnesses. Both are surrounded by stigma and taboos. Both suck.

I’m comparing my experience of these two illnesses to show the similarities and differences and hopefully give an insight into the literal and metaphorical pain of living with multiple conditions. (Oh, I also have asthma, migraines and PCOS etc., etc., but we’ll be here all day if I go through everything.)

Symptoms

Endo

Painful, heavy, irregular periods; Pain during or after sex; Infertility; Painful bowel movements; Fatigue

For me, my endo symptoms began with my first period at 13. I had really heavy, really painful periods that could happen at any time. When I was 20, I began having pain every day and was knocked out by the associated fatigue. I had bowel problems for as long as I could remember but they got worse. I hadn’t had sex but using tampons or having anything internal was simply not possible due to pain. My vagina was a no-go zone.

IC

Frequency in urination; Urgency in urination including pain, spasms, incontinence; Abdominal/pelvic/vaginal pain including painful sex

For me, I’d always been prone to UTIs and kidney infections way more than anyone else I knew. I guzzled cranberry juice like there was no tomorrow. At 24, the familiar UTI-like feelings just wouldn’t go away no matter how many antibiotics my GP put me on. I started peeing ten times more than ever before. I started having “accidents” which are neither the kind toddlers have in nappy ads or middle-aged women have when laughing in Tena ads. Those are somehow acceptable versions of incontinence (along with being really old). To be 24 and worried about leaving a puddle on your seat in the cinema is not okay. I started having spasms in my bladder and a nearly-constant burning in my urethra and vagina. Again, vagina not happy.

Diagnosis

Endo

In the UK on average it takes 7.5 years to be diagnosed with endometriosis. I was diagnosed after 5 but told I was cured and the word ‘endometriosis’ crossed off my files. When my symptoms returned a year after lasering the endo off, I had to start at the beginning again. Go through every test and hospital department all over and be told that there was no way it was endo, I had been ‘cured’. The second diagnosis (of the same disease) came 10 years after my symptoms started. This is generally the timeline I use to describe my diagnosis time since the first diagnosis was magically erased.

IC

I can’t find a definitive average for IC diagnoses but since a lot of it involves ruling out other possibilities first, we’re talking years rather than months. For me, it was only 2 years until I got a hesitant diagnosis of mild IC. And I am incredibly grateful for that.

Why the difference in diagnosing times?

Well, I have a few thoughts on why my IC diagnosis came a lot quicker than my endo one. Firstly, I knew my body extremely well. I’d been meticulous about monitoring my endo symptoms and I just knew these bladder symptoms were different. Secondly, I was more confident when I pursued a diagnosis for my bladder. As a teenage girl with bad periods I’d been fobbed off by medical professionals for most of my life and after the artificial menopause at 22, I just knew I couldn’t take that any more. I learned to self-advocate and educated myself on what was going on in my body. I got better at taking control of my own healthcare and having a say in what treatments doctors were doing. I became what some term an ‘expert patient’ though I’m pretty sure doctors and hospital management refer to me as something far more rude. But you know what? My lot in life didn’t improve until I started standing up for myself medically. I didn’t get answers until I started annoying pretty much anybody who could help. So, when I asked my gynaecologist about my new bladder symptoms he sent me off to uro-gynae to get it looked into.

Treatments

Endo

The way women with endometriosis are treated in Northern Ireland is tantamount to a crime. Suggesting that a young woman in pelvic pain is ‘hysterical’ and needs therapy rather than medical intervention is an idea more at home in the pages of a Victorian novel rather than a western society in the twenty-first century. Needless to say, the way I have been treated for my endo has been negligible. Some of the people have been lovely but some have attitudes and manners more becoming to a Neanderthal. The management of endo as a chronic condition does not yet exist. Every step of the path to diagnosis and after it is an uphill struggle against chronic incompetence, ignorance and wilful neglect. Temporary treatments like the pill and coil helped with bleeding but didn’t touch the pain. The menopause made it worse. When I finally got excision surgery it was like reaching the promised land. My condition was recognised and treated properly but I was exhausted from the struggle. Then, a few years later, the cycle started again. I’m a few months post-excision and feeling fantastic but I know the fight will continue when the endo comes back.

IC

For IC my treatments have been a lot more physical than endo. I attend physiotherapy to help with my screwed up pelvic floor muscles and started a course of bladder instillations to help repair the lining of my bladder. All within a few months of diagnosis. The hospitals were the same, even some of the people were the same but it was like a different planet. One where you were respected and treated with dignity. Of course, the illusion of progress has now faded. My treatments were improving my symptoms so much that I literally didn’t even feel like me any more. Then the pile of cards came tumbling down. Interstitial Cystitis is a rare disease that not many have heard of and the dedicated clinic for treatment was run by one nurse. When that nurse became ill, everything stopped. Because the treatments need to be regular to work, the improvements I had experienced are being undone and my symptoms are creeping back. My bladder is rebelling to tight clothes, food and drink and my vagina has been designated as a war zone once more.

While my own experiences have shown differences between endo and IC, there are of course many similarities. Mostly, the way it makes people feel when you talk about them. I talk about my lady parts a lot (have you noticed?) so I think to some it was a relief when I got a disease that wasn’t uterus-related. However, 90% of those with IC (around 400,000 in UK) are women. Both conditions highlight the attitudes of society to invisible illness and ‘women’s illness’.  Both are under-funded and under-researched. Both are subjects not polite to talk about over dinner or on a first date. (I have done both.) But its about time that we start talking about these things and do it loudly so no one has the option to put their fingers in their ears and pretend they can’t hear. Both desperately need more awareness. Let’s make some noise.

 

 

For more info on endo see

https://www.endometriosis-uk.org/information

For more info on IC see

http://www.cobfoundation.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome

 

Feel the fear and do it anyway

Reblogging a guest post I wrote for endometriosis awareness week coinciding with my smear test! Looking after our gynaecological health is so important and just because it hurts, doesn’t mean you shouldn’t get your smear. So, if No Fear Go Smear doesn’t apply to you, know that you are not alone. Many women struggle with vaginal pain and associated pelvic pain but rarely talk about it. I urge you not to put off going for your smear just because you know it will hurt – arrange it for a time that suits you, explain everything thoroughly before hand and try your best to relax. You never know, it might just save your life!

cervicalscreen1

Robyn, @randomrobyn shares her experiences of Endometriosis and cervical screening

I’ve had painful periods since I was 13, chronic pelvic pain from the age of 20, diagnosed with Poly Cystic Ovarian Syndrome at 21 and endometriosis at 23. So, I am no stranger to the gynaecologist. Over the years, my embarrassment of talking about my lady parts has gradually decreased to virtually non-existent. Now, at 27, I also have a bladder condition called Interstitial Cystitis. Once a month I get a special treatment applied via catheter directly into my bladder. I also have pelvic floor physiotherapy. Getting naked from the waist down is a normal part of any doctor or hospital appointment for me.
But, when I received my smear letter at 25, I freaked out. My endometriosis has not only meant that I live in pelvic pain each day but has also affected me in a very intimate way…

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Excision Surgery

So…after months and months of waiting, I was finally called in for my excision surgery in early December.  The week before I had all my pre-op tests done, including my first ECG. The day before, a test had to be repeated because it had gone out of date since the week before so I went to the hospital for a blood test.  The big day came and I was admitted to the day of surgery ward.  My mum was sent off and I settled in to wait until my afternoon theatre slot. I saw a registrar and signed my consent form.  I waited. Then the registrar came back.  My operation was cancelled.

A morning case had been more complicated than expected and knocked the afternoon list out of whack.  What especially hurt was that I have been that complicated case myself during my lap in 2012.  However, in my case I was simply closed up and told to come back for proper surgery in six months. I was too complicated to even cope with on the spot.

I returned home heart-broken, unable to see an end to my pain.  It was nothing I hadn’t experienced before.  The health service had consistently disappointed me in the 14 years I’d been suffering from pelvic pain. How could I expect this to go swimmingly? I allowed myself a few days to throw a pity party and then I got angry.

No one got in touch from the hospital – even though I’d been assured I’d hear from them first thing on Monday. On Tuesday, I was climbing the walls.  I was not going to be forgotten about. I started ringing and emailing everyone I could, trying to get someone to help. No one knew anything. My consultant’s secretary had no idea what was happening.  The waiting list office thought I’d had my surgery the previous week. The whole thing was a shambles. I contacted the Patient Client Council to see if they could get through the doors being slammed in my face. Through sheer stubbornness, I eventually got to speak to the omnipotent lord of all gynae theatre management who told me in no uncertain terms, I’d have to wait until January. I resigned myself to another Christmas in pain.  Resigned myself to not being able to finish my PhD any time soon.

Maybe it was the fact that I made so much noise.  Maybe it was the prayers being sent up from my church, friends and family. Maybe my consultant felt bad for not being able to help me when he said he would.  Whatever prompted it, a miracle happened.

The week before Christmas, I had my operation.  I kept my expectations low and told few people. I arranged all my own pre-op assessments once again, promised them for the fourth time in a month that I definitely wasn’t pregnant and wangled my pre-surgery drugs out of my unwilling GP.

I was only kept in hospital overnight and joy of all joys, woke up without a pelvic drain.  I had only three wounds and a catheter and was sore as hell. Although I’d seen my consultant only once before theatre, I never saw him any other time. A team of doctors including a woman who questioned why I wanted an operation at all and who had told me I even needed one, informed me that they had removed adhesions from my Pouch of Douglas.

I had endo removed from there in 2013 when I was classified as Stage IV. The adhesions were sticking my bowel and uterus together so after unsticking them (check me out with my medical lingo) they put some magic stuff in to hopefully keep them from sticking together again. I was groggy and sore but I asked as many questions as I could think of. Most women apparently don’t ask that many questions. They just want to be told if they’ve been fixed and no details, thank you please. Not me. I needed the details.

I had a quiet Christmas, watching movies, eating and colouring in, letting my body heal. Feeling my bowel slowly adjust to what its meant to do.  Finding myself gradually becoming stronger, able to move a little quicker, last a little longer.

By no means is the war over. But this battle has been won. And I am revelling in the victory.

 

 

The long and winding road

I’m hopefully having an operation next week. Something I am desperately excited about.  This may seem weird to normal, healthy people.  People whose experience of hospitals is minimal.  But, I know this operation will help me live a better life. For a while anyway.

Three years ago I had excision surgery for endometriosis.  This is where a skilled surgeon cuts out all the bits of endo growing inside me. Last time it was in my pelvic ligaments, the outside of my uterus, a little bit on my intestines, the Pouch of Douglas, rectum and vagina. When I had it removed, life was awesome. Some days I was even able to wear jeans that fitted me (the ultimate dream). I did most of a PhD, went to conferences here, there and everywhere and had a long-distance relationship that involved a lot of airports. Last year, things started getting slowly worse. I had new problems on top of the pain that was creeping back into a starring role in my life. This year has been hell. I’ve become so ill that most days I can’t leave my house. I’ve continued as best I can but life has been hard. I’ve had problems with basic bodily functions. I’ve had so much fatigue that I have to lie down for 15 minutes after having a shower. I can’t do more than one thing on the same day. I have barely been living.

In April, my consultant put me on the ‘urgent’ list for an operation. He initially was sceptic about the amount of pain I claimed to be in, hardly surprising when three years ago he told me I definitely did not have anything wrong with me.  He did an internal scan and whatever he saw changed his mind about my need for excision. I have considerable issues with internal scans, or anything internal for that matter. The only one I’ve had before was at the age of 20 when a female gynaecologist told me she wanted to examine me and I didn’t understand what was going to happen until she grabbed a giant stick, put a condom on it and started putting lube on it. As a virgin, I did not react well to this alien object being stuck inside me and cried so hard, the nurse whose hand I was clenching begged the woman to stop. After that experience and with increasing confidence in directing what I need from my health care providers, I have firmly stated to them that I cannot handle an internal scan as I can’t even use tampons. In April, I was so desperate to be taken seriously by the one human who could help that I agreed. It was horrendous but it worked.

The ‘urgent’ list was nine months. The normal list was fourteen. I continued on, planning for an operation in January, setting myself a goalpost to work towards. Then, when I phoned up about when I would have my cystoscopy (which had to be before the excision) I was told that I wouldn’t get my excision surgery until next April/May. I was so disappointed and frustrated.  It wasn’t just me though.  Thousands of people in Northern Ireland were waiting years for desperately-needed operations, or even just to see a consultant. A bigwig from England claimed that ‘heads would roll’ if what was happening in NI happened in the rest of the UK.

http://www.bbc.co.uk/news/uk-northern-ireland-34406754

 

I was asked to go on the radio here in Belfast to talk about how the waiting list times were affecting me.  I also ended up in a segment on the news. As a result of these interviews, I got a phone call the next day from one of my hospitals and ended up having my pain clinic appointment brought forward.  This was excellent news but I was growing weaker every day and I knew I could not live like this until April.

My mum and I, after months of putting it off, finally went to see our local MP to ask for help. Because NI politics are pretty ridiculous, this was in the middle of various ministers, including the Minister for Health, repeatedly resigning every week. This visit coincided with the Guardians’ brilliant endo campaign, which you should check out if you haven’t already

http://www.theguardian.com/society/endometriosis

so I was armed with front page news on my condition. A few weeks later I received a written response from the civil servants filling in for our sometimes-absent Health Minister.  It told me I had to wait until June. There were 44 women ahead of me on my consultant’s list. Now, that’s a general gynae list because the only specialist in NI is an obs/gynae consultant and cannot just have an endometriosis list. At this point, my heart broke. Mum and I started looking into using savings and getting loans to go privately, something we really couldn’t afford to do. I managed to get an emergency appointment with my consultant at the end of October when he took one look at me and knew I needed this operation. He prioritised my case and last week, I got a provisional date.

My pre-op assessments were this week, tests I’ve had many times before as the NHS sends for you repeatedly for them as they only last for 3 months. My general health is much worse than its ever been before and I am praying that I pass all the tests they did so that they let this go ahead. I have taken time off uni, pushed back my submission of my thesis, postponed my physiotherapy and starting my new bladder treatment until after I have recovered. I’ve made all the arrangements I can make but I am still terrified that it won’t happen. At the same time, I am exhausted.  I have had to fight so hard to get to this stage. At times, my mum took up the fight because I was just too tired to continue. It breaks my heart that even after almost ten years trying to get a diagnosis for my pain, I still have to struggle so much.  The fighting never seems to end.

But, I live with hope.

Hope that this surgery will lessen my pain and improve my quality of life. Hope that I will one day be able to have a family. Hope that one day things will be better for the millions of women and girls who fight this disease. Hope that one day there will be a cure.