My Hospital Debut

Saturday 4th February 2017
BMI Coombe Wing
Kingston Hospital, London

Today was a day of firsts. At the age of 36 and a half (+14 days) it was my first hospital admission, my first general anaesthetic and my first operation. Despite all the biopsies, scans and other tests I've had previously, I've been pretty fortunate so far.

I'm usually calm in most circumstances, but in the week leading up to the procedure I found myself thinking not so much about the operation itself, but the anaesthesia - loss of sensation. I had spoken to a few people about my worries and I had mixed reviews. Some hate the thought of being in an induced sleep, while others seem to enjoy the heady sensation of coming round. Thinking about being knocked out then waking up in an entirely different place with no recollection of the bit in between did scare me, but intrigued me at the same time.

We woke early to be at the hospital for 7am. Kingston Hospital is only a 15 minute drive so I was grateful I didn't have long to dwell on the impending procedure. We arrived early and were shown to my room, it seemed comfortable enough but I hoped I wouldn't have to spend too long there. The nurse explained that I would be first into theatre that day and I would need to change into the cotton gown, dark green compression socks and extremely fetching paper knickers. Both Mr Kalu and the anaesthetist came round to discuss what would happen before and during the operation and to answer any questions I might have. We talked about the gas that would be pumped into my abdomen so he could see my organs more clearly and how this might be uncomfortable for a few days after the operation. Soon afterwards, nurse Izabela (who was an absolute angel) came to collect me and we walked down to the anaesthesia room which was adjoined to the operating theatre. Even though we were talking about anything but the procedure, I started to feel quite anxious and I suddenly wished Jon was still with me. She made sure I was comfortable on the trolley, gave my arm a quick reassuring squeeze and left me in the capable hands of the anaesthetists. I was hooked up to the monitor and they started asking me about my home, my job and anything else to take my mind off the cannula that was being inserted into my left hand. A mask was placed over my nose and mouth and...

I woke up in a recovery room with a few other patients, all of whom were looking decidedly perkier than myself. Nurse Izabela was again squeezing and rubbing my arm, but this time it was to encourage me to wake up, something I was very reluctant to do at the time. I enjoyed the hazy feeling of slowly regaining consciousness but I just wanted to sleep, I couldn't understand why they wouldn't allow me to doze. I think I was in the recovery room for around half an hour before they wheeled me back up to my room, still feeling inebriated and grinning like a loon at my husband.

As much as I wanted to sleep, I was urged to stay awake as the nurses needed to check my readings every 15 minutes - heart rate, blood pressure and oxygen levels. My blood pressure was really low so they gave me intravenous fluids and oxygen. I remember feeling extremely dehydrated and was chugging water like it was going out of fashion. The nurses stressed how important it was for me to try to wee as it's quite common to have a sleepy bladder after having a general anaesthetic. Patience is something I haven't been blessed with.

I wasn't hungry but I'd been in theatre for two hours so I was brought lunch not long after being deposited back on my bed. As lovely as it was, I struggled to eat the cod and mash as my dry mouth made it extremely difficult to swallow anything without having a sip of water after each mouthful. Jon was again the lucky recipient of the rest of my meal.

Being a Saturday, I was glad I'd decided to bring our iPad so we could watch Chelsea convincingly beat the Gooners. I just wished that I'd had full control of my bobbing head to fully appreciate the win at the time. I can only compare it to fighting tiredness on a long haul flight, although I'm glad I didn't have the embarrassment of falling asleep on someone's shoulder this time.

I still had no idea of my diagnosis or what surgery had been carried out whilst I was anaesthetised. I was aware that as well as the naval incision, there were two other dressings, one over each ovary. I assumed that some kind of surgery had taken place as I was sure a diagnostic laparoscopy wouldn't have taken two hours. While I was waiting for Mr Kalu to do his rounds, I was still being monitored regularly. The nurses were worried about my low blood pressure and my lack of pee - I didn't understand how I could possibly be dehydrated with the insane amount of water and herbal tea I was getting through. I was attempting to walk (shuffle) up and down the corridor by this point to try and spark my lazy bladder back to life and to release some of the gas pressure in my abdomen which was becoming more uncomfortable. I was trying everything, sitting on the toilet for a few minutes, running a tap, thinking of waterfalls... nada. I think it was around 8 hours before my bladder gave in under the strain and I managed to leak what I thought was, a fair amount into the pan. My joy was unfortunately short-lived. The nurse measured the pee from the cardboard pot then carried out a scan to see how much was left in my bladder. There was still 500ml of liquid remaining, this is a dangerous level which could lead to all kinds of urinary complications if not drained. The same process happened a couple of hours later - elation at being able to pee followed by despondency that it wasn't enough. The nurses were now suggesting that I would have to stay in overnight and have a catheter inserted if my situation didn't improve by early evening. Fan-bloody-tastic.

Mr Kalu arrived later that afternoon and went through everything that he did during the procedure. He firstly confirmed that he had found a uterine septum (option C from the previous post) and that he'd removed as much as the fibrous tissue as he could. He had fitted a copper coil and prescribed me a course of oestrogen (HRT) to aid endometrial regeneration over the area of surgery. He went on to explain that he had found significant deep infiltrating endometriosis (DIE) and adenomyosis and would grade it as severe (stage 4) as it was so widespread. He had found deep lesions on the outer surface of my uterus, peritoneum, Pouch of Douglas and bowel. This is where it got a little bit hazy - too much to take in when you're struggling with concentration - but he said it was all recorded in a letter which he then handed to me. My GP would also receive a copy. I tried to understand what was written in the letter, but it was full of medical terms which would need going over with a fine-tooth comb (Dr Google) when I was more alert, right now I needed to focus on getting out of hospital.

It got to 8pm and there was no improvement in my vesical function, the decision was made that I would have to stay overnight and have a catheter inserted to drain my bladder. I started to worry that it might never function properly ever again. Now, I've never had a problem with exposing my nethers to doctors and nurses, I've had enough tests over the years not to be overly self-conscious, but this next bit took undignified to a completely new level. I was quite distressed as I lay on the bed trying to mentally prepare myself for what was going to happen. I knew I had to relax to help the nurse with the insertion but it was difficult when you see the size of the tube and have no idea how that is going to fit in there. I wouldn't say it hurt, but it did sting and it was certainly very uncomfortable. The nurse seemed to be stretching and poking around down there for a long time which was only adding to my anguish, but eventually, she seemed happy enough and left me and my bag to it. A couple of minutes later she popped her head round the door to have a look at my pee progress but looked baffled because the pouch was completely empty. With the amount of liquid in my bladder, it should have been flowing straight away. After a few more bewildered glances she came back, this time with another nurse to attempt another insertion. After much head scratching, peering, prodding and leaking, between them they were successful with attempt number three and in just a few minutes I had filled the bag with a litre of fluid. What a traumatising ordeal.

Jon left around 10pm to let me try and sleep, it had been a long day and we were both exhausted. Although I had drained well over a litre and a half by this point, I was still feeling extremely bloated. I put this down to the gas in my abdomen rather than my bladder being stretched. I was lucky I didn't experience any shoulder pain that is a common occurrence after a laparoscopy. I managed to get a little sleep propped up in my hospital bed in between the nurse calls and the corridor chatter. I was grateful to have my own room, despite the private bathroom being wasted on me.

The next day Jon arrived around 8am, I'd been awake for a couple of hours and felt much better than the previous day. I wasn't in too much pain but the catheter was starting to agitate me. I'd been grateful for it through the night as it meant I hadn't had to get up on my own to go to the loo, now it was just getting in the way. After breakfast, Mr Kalu came in to see how I was doing. He informed me that it might take a while for me to urinate after they take the catheter out, but I had to be patient - patience is definitely not something I've been blessed with! My readings were back to normal and the nurses decided it would be a good time to say goodbye and good riddance to the tube. Remarkably, I managed to go for a completely normal pee within an hour so I could finally start to look forward to going home.

We ended up staying until after lunch as they thought my medication from the pharmacy downstairs would soon be ready for me to collect. After not eating much the previous day, my appetite had returned and I wasn't going to miss out on the roast beef I had ordered earlier! Another hour passed and I was getting restless, I just wanted to get home to the comfort of my own sofa. I signed the discharge forms and we carefully drove home, holding the seat belt and the elastic in my leggings away from my abdomen the whole way. Of course we had a call from the hospital within minutes of us being back saying my medication was ready.

Progress

After visiting my GP two years ago, I was referred for a pelvic ultrasound at St. Helier Hospital. I'd stopped taking the contraceptive pill 18 months previous with no success so we were keen to find out if there were any complications. The results of the ultrasound were fairly inconclusive, but I appeared to be ovulating which was encouraging.

Because nothing significant showed up on the ultrasound, I didn't return to my doctor for another 12 months. We'd moved house shortly after the last hospital appointment and it took time to settle into the new neighbourhood and change doctors, I guess we again just assumed we would conceive naturally during this time. What happened next changed all our lives forever - my father suddenly and unexpectedly passed away on 1st December 2015 from a massive heart attack. My world was completely turned upside down, I adored my daddy. For a few months, whilst I was going through the various horrific stages of grief, I couldn't even bear to think about children. It was too painful to comprehend that my Papa would now never meet his grandchild or that our son or daughter would grow up never knowing my lovely dad. On the other side of the coin, mum's deep sadness turned into longing for a little person to fill a small part of the colossal hole dad had left in our lives.

After a few very sad and challenging months, I booked an appointment at the new practice and went through my history with my new GP. She was really supportive and referred me to the gynaecology unit at Queen Mary's Hospital in Roehampton. I had my first appointment at the clinic in June of last year.

Two months later I had been booked in for a transvaginal pelvic scan and hysterosalpingogram - thankfully abbreviated to HSG. The first is an ultrasound which involves the insertion of a probe, enabling detailed images of the uterus and the ovaries to be obtained. The second is an x-ray using dye to determine if the fallopian tubes are open and to see if the uterus is a normal size and shape. I can only compare this to a lengthy smear test, it didn't hurt but it was assuredly uncomfortable. After these procedures I was given a mixed bag of good and bad news. The dye had travelled freely through my tubes which meant there were no blockages but my uterus appeared to be an abnormal shape. I had no idea what this meant and I wasn't given anymore information at the time.

During the follow-up appointment in October 2016 - my first meeting with Consultant Obstetrician & Gynaecologist, Mr Emmanuel Kalu - we talked about the results of the scan, the irregular shape of my uterus and the possibility that I could be suffering with endometriosis. And that was my first introduction to the condition. En-doh-mee-tree-oh-sis.

After studying the ultrasound and HSG results he tried to illustrate the possible semblance of my womb with a series of drawings. Doctor's scribbles are as bad as their handwriting so I've redrawn them for the purpose of my blog - I do like a good doodle. He suggested that he would be very surprised if the outcome wasn't option B or C.

Bog standard uterus

Arcurate uterus -  looks like a normal uterus, except it has a dip or a slight indentation at the top.

Septate uterus - the inside of the uterus is divided by a muscular or fibrous wall called the septum.

Mr Kalu advised I would need a further procedure called a laparoscopy to determine if I was suffering from endometriosis. It would also reveal which of the three illustrations resembled the shape of my uterus, which would be critical if we wanted to have children. He explained about the small incisions he would make in my belly button (wince) and abdomen and the possible surgery he would carry out if endometriosis was found. I felt confident and happy being under his wing. We discussed private health care as this is something I could claim through my insurance at work, he agreed this would be the most favourable option.

Of course I went home and googled endometriosis straight away. I read pages and pages about the condition. I was astounded to discover that 1 in 10 women suffer with it in varying degrees. If it's so common, why has it not been mentioned before by my GPs, considering my previous history?

My first laparoscopy was booked in for 10th December, six weeks after my appointment with Mr Kalu. Unfortunately I had to postpone the operation due to suffering with a chest infection the previous week, I was devastated. I had to wait eight weeks for another date - Saturday 4th February 2017.

IBS

Jon and I relocated to London in 2003 and bought a small two bedroom flat in Colliers Wood two years later. I enjoyed the lifestyle, I already had friends in London and soon formed new friendships through work and going out locally. It was around this time I started to experience abdominal problems which were becoming more frequent and more acute.

I became familiar with excruciating stomach and rectal cramps, constipation and horrible bouts of diarrhoea, especially around the time of my period. Bouts of cystitis became more persistent and painful. I found myself feeling bloated for 80-90% of the time and I became convinced that certain foods were not helping my cause. I was spending more and more time cramped up in the bathroom, usually at the most inconvenient times, i.e. five minutes before I was due to leave for work. Sudden peristalsis brought on waves of nausea and at times I didn't know whether I should be sitting on or hanging over the loo. Trying to focus on anything but the agony, the intense pain induced cold sweats and the need to grab onto anything in the vicinity for support (usually the bath or the towel rail). Anyone listening in would be forgiven for thinking I might be going through some kind of poop labour. As you can imagine, I'm extremely fed-up with the whole shitty situation (excuse the pun).

Another negative to the gut blockade is that I'm rarely hungry. Negative? I hear you say. Sometimes I go out for dinner and I can only manage a couple of mouthfuls before I feel full. Before you say that sounds like a perfect diet solution, it's not. I want to be able to enjoy the plate of food someone has lovingly prepared for me, not pick at it and offer it round the table. The only plus is that I never get hangry!

I haven't been on many holidays which haven't involved me going through an abdominal trauma of sorts. I've put this down to eating out most days, trying different foods and a change in routine. When relaying the experiences to friends on my return, they can't believe I still managed to have a good time, I guess I've become very good at dealing with it.

The first bad travel experience since I was put on the pill was Milan, Italy in 2006. We were there for a weekend to see our friend's band support The Magic Numbers and we wanted to see as much of the city as possible around the gig. As soon as we arrived, we headed to the nearest pizzeria and I attempted to eat a pizza the size of a large platter (albeit a very feeble attempt). Two days of Italian indulgence later I felt terrible, like I was carrying a lead weight in my abdomen which wouldn't shift. Sightseeing cancelled - I just wanted to crawl into bed.

Two other trips stand out for me for the wrong reasons. I was ill for the majority of our honeymoon in Sri Lanka, which certainly wasn't ideal when travelling. On the day long drive from Adam's Peak to Galle to I had to ask our driver to stop several times. It soon became apparent that there were a lack of public facilities on our route south, the only option was to knock on someone's door to ask to use the toilet in their home. I say toilet in the loosest sense of the word, hole in the ground with a curtain for a door was closer to the truth - any dignity I had was long gone. On a positive side note, I've adapted to being able to use the most repulsive toilets, even the cesspits at Glastonbury Festival are a breeze to me. Just to top the trip off, the taxi journey from Bentota to the airport in Colombo was possibly one of the worst experiences of my life, it felt like everything from the diaphragm down was set in concrete. I was in such excruciating pain, I could barely talk as I was trying to concentrate on not passing out. I came incredibly close to asking the driver to take me to the nearest hospital.

The second (and definitely the worst) holiday nightmare also involved a long journey. I'd been feeling constipated and bloated for a while before we left for Morocco in 2010, the full feeling didn't subside and I just felt worse over the first couple of days. Eating became problematic, managing just a few mouthfuls at each mealtime. We'd booked into a beautiful restaurant for our last night in Marrakech weeks previously and even though it was the last thing I felt like doing, we decided to keep the booking. Jon had become used to eating two meals so it was nothing new! The next day I was in agony, I felt like my stomach had been replaced with a 10lb bowling ball - the pain was crippling. It's a good job we didn't have to endure a 12 hour journey to the middle of the desert then. Oh crap.

I would abolish that horrendous day completely from my memory if I could. I was embarrassed and felt bad for the others in our vehicle who we'd just met and I hardly uttered a word to the whole way (thanks Mayra and Martin for being so lovely). Nothing helped with the pain and nausea, I was just concentrating on getting through it, willing both the journey and the hell I was going through to be over. Thankfully, by the time we'd got to the desert camp the following day I was relieved to be feeling a little better and I could start to enjoy the trip - mud hut toilets and all. A few days later, on a three hour bus journey from Marrakech to Essaouira my bowels decided to flip the situation on it's head and I had another problem to worry about, the dreaded D. I had no choice but to take Imodium which took me straight back to square one.

I don't mean to harp on about what happened to me on holidays, these experiences only stand out because I can place where I am when I'm feeling my worst. Of course there have been countless times when I've suffered at home or at work or when I've been out shopping, but I'll spare you of the encounters from various loos across the UK - that would make a very unrewarding read.

I decided to pay for a food intolerance test to determine if certain foods were the reason for my flare ups. This proved very interesting. After speaking to the nutritionist about the results, she advised me to cut out cows milk, eggs, wheat, onion, soy and yeast. The plan was to reintroduce each of these back into my diet gradually after a few months; it was basically the caveman diet. Unfortunately, along with the majority of food with any flavour, this meant no wine and no crisps - anyone who knows me will appreciate how much of a big deal that was! I was strict with myself and kept to the diet for a year as I was determined to see progress. Unfortunately, it didn't make too much of a difference to my symptoms, but I did lose half a stone in weight which is never a bad thing.

In the following few months I was referred to a dietitian at St George's hospital and I was advised to try various diets (fructose malabsorption, FODMAP) with little success.

Fed up, I returned to my doctor in October 2011 who once more referred me to the Gastroenterology department. After a couple of appointments discussing diet options (again) and drug treatments I was eventually booked in for a colonoscopy. This took place four months later in front of three student nurses who peered intriguingly at the tube hanging out of my butt - I was enjoying the sedation far too much to care.

The biopsy results came back and apart from a focal area of mild cryptitis there wasn't much to shout about. I was dumbfounded, how could they find nothing when I felt so terrible all the time? I was discharged with a diagnosis of chronic constipation and IBS and that was that. Sent off on my merry way. I felt dejected but I had to accept it.

Today, five years after being discharged, I'm still suffering almost every day.

Back(side) Story

24 years ago at the age of 13, I started a challenging and complicated relationship with puberty. The enemy? My menarche, Aunt Flo.

I soon became well acquainted with my monthly cycles, and as much as I tried, they were certainly something I couldn't ignore. I was terribly anaemic, my periods became heavier and more painful and I was soon taking a day off school most months, paralysed with sickness, curled and cramped up in bed with a hot water bottle. The shooting pains down my legs were just another factor to add to my suffering. I found the thought of having to go through this torture every four weeks for the next 40 years quite harrowing. Mum discouraged me from taking time away from education, but some days were so unbearable, I just couldn't face the trauma of having to deal with dysmenorrhoea at school. Mum was even convinced I had appendicitis until the pain was apparently cyclical. This abhorrent monthly gift was making me extremely miserable and affecting my quality of life but I just assumed this was a completely normal. I was a girl and I was stuck with it.

I've had many traumatic menstrual experiences over the years but a couple in particular will be rooted in my memory forever. The first was on holiday, our first family trip abroad to France in the summer of 1994. I wasn't feeling well but my parents convinced me to join them and my brother on the beach. I spent an hour in a foetal position in the shade but the cramps and the sweltering heat combined made it unbearable. Dad helped me to the car but I remember passing out with the pain on the beach before we got there. Back at the tent, I spent the rest of the day on a flimsy, foam mattress bed and distracted myself from the discomfort by tuning in to TMS on Radio 4 (we won the third test at The Oval to draw the series against South Africa). The avuncular voice of Aggers undoubtedly helped me through that day! There was a further incident on holiday a couple of years later where again my Dad (my hero) got up and escorted me to the toilet block in the early hours of the morning when I was doubled over with stomach cramps. After the pain had eased, we sat up watching the sunrise over the fields, both convinced we saw a black panther in the distance. I think he was probably humouring me though.

Another occasion, while I was in the first year at sixth form, I was due to sit a French Oral exam and Aunt Flo had decided to make an early appearance. Horrified, I had no choice but to put up with the pain and go through with the exam. I made sure I was prepared just before I went in but half way through (it was only half an hour), I realised The Great Flood Had Cometh. Never again would I wear light coloured jeans.

Shortly after that, Mum took me to the doctors and I was prescribed Microgynon® - a brand of contraceptive combined pill. It meant my periods were more regular, less heavy and most importantly, less painful. It was such a relief to finally find a way of managing my monthly nemesis.

The years went by, I graduated from university, worked a ski season in Les Deux Alpes, France (where I met my husband Jon) and moved to London. During this time, I had several abnormal smear tests and I was referred for a colposcopy and cone biopsy. This referral just happened to come half way through my stint as a seasonaire en France and my doctor advised it was best to have the procedure sooner rather than later. I'd survived most things thrown my way throughout those four months - even the gastroenteritis pandemic which swept through the whole resort and beyond - but I found myself in a hospital in Grenoble with a gynecologist who didn't speak a word of English. It was a pretty petrifying experience. Fortunately for me, my hotel manager who speaks fluent French, accompanied me to the hospital. Unfortunately for her, she had to listen to the whole thing from the other side of the curtain, squeals and all (thank you Caroline).

After the ski season, we moved to London and it was around this time I started to notice I was suffering more and more with bloating, pelvic and rectal cramps, constipation and other gruesomeness (I won't elaborate at this point). These symptoms were a great deal worse just before and during my period. To cut a long story short (the long version will be in the next post), I tried various different diets and finally got diagnosed with Irritable Bowel Syndrome - the collective condition doctors seem to bestow when they don't really know how else to diagnose it. I wasn't convinced but I lived with it.

At the age of 33, in September 2013, I chose to come off the pill after 17 years of continuous use. Jon and I decided that we would now just wait and see what nature would throw at us. Neither of us were desperate to have children right at that moment (we'd already been married for six years), but we had stopped using contraception for a reason - to get pregnant. I'd always suffered with jealousy when friends announced their joyous news, even when I was in my twenties and it was the last thing on my mind. I had these confusing, deep-rooted feelings that I was being left behind, I guess very similar to FOMO. Seeing our friends and the wonderful relationships they had with their children certainly made me think about being a mother a lot; I didn't want to get to 45 and regret the decision if we had decided not to become parents. I guess I just took it for granted that it would happen one day, as most people do.

Three and a half years later, it turns out Mother Nature isn't that great at throwing, not in our direction anyway.

October 2016, Queen Mary's Hospital, Roehampton. I get my referral for a laparoscopy with suspected endometriosis. Endo what?!

Introduction

So, the E word. The one I seem to have such difficulty pronouncing. Despite the tricky name, endometriosis is actually very common - it's estimated to affect 1 in 10 women worldwide and around 1.5 million women in the UK are currently living with the condition. I'm sure some of you have heard of it and probably know someone who suffers with it, but for some reason it seems to be rarely discussed. I mean, how have I never come across something so commonplace in women's health? Why has it not been suggested before now that endometriosis could be the reason behind the symptoms I've been suffering with for so long if it affects that many women? Shockingly, the average time span for a women to get diagnosed with endometriosis in the UK is 7.5 years.

I've decided to write a blog, not only for my own benefit, but I hope it will also bring support and comfort for others going through the same experience, it's always nice to know you're not the only one suffering.

Endometriosis [en-doh-mee-tree-oh-sis] is a chronic and debilitating condition where tissue similar to the uterine lining (endometrium) is found outside the uterus. It is commonly found on the ovaries, fallopian tubes, the surface of the uterus, the bowel and on the membrane lining of the pelvic cavity (peritoneum). The ebb and flow of oestrogen throughout the month works on this external endometrial tissue just as it does on the uterine lining, inciting growth when oestrogen levels are high. Fine for normal tissue within the uterus, but when excess endometrial tissue in the pelvic cavity grows, it can be debilitating. It can cause severe pain, unusual bleeding, adhesions and damage to other organs, including the bowel and bladder. It can also lead to depression, fatigue and even infertility. In fact, the prevalence of endometriosis in women with infertility is thought to be somewhere around 40%. Because endometriosis is an oestrogen dominant condition, it causes hormonal imbalance. This, plus inflammation and scar tissue damage isn't a good recipe for healthy fertility.

A week ago I was officially diagnosed with severe endometriosis (plus other complications which I'll go into later) after undergoing a laparoscopy - the gold standard and only definitive procedure to confirm it. My consultant decided to grade my condition as Stage IV (most severe) because I not only have significant lesions on the outer surface of the uterus, but also deep infiltrating endometriosis (DIE) on the pelvic wall peritoneum and bowel. My lower bowel is fused and hitched right up to the back of my cervix. This explains a lot.

This diagnosis has surprisingly come as a bit of a relief in a way, as I can now put a name to the symptoms I've been experiencing for many years. I no longer have to explain to people that I have no idea of the reasons behind the chronic pain, cramps, constipation and - at the other end of the poo scale - the literal shitstorm that inevitably follows. I no longer have to tell people I suffer from IBS because the doctors didn't know how else to classify it when all the testing showed nothing. I can now start to follow a diet that might actually help my symptoms rather than the 'clutching at straws' diets I've previously tried.

Now I have a diagnosis, I can hopefully start to manage it. Wish me luck.