Baby Celebrations

It's been a bit of a strange weekend filled with highs and lows and everything in between, I've really struggled to cope with my feeling at times. I've not only had to deal with us attempting to do my first injection in my best mate's kitchen, but also the emotions that came with attending her surprise baby shower.

I'd been involved with the organisation of Clare's baby celebrations (the arty bits) for a few weeks so after working out the dates, I knew it would fall in the middle of my treatment and possibly stim injections. I also realised it would be mentally tough, as I said in a previous post, we'd talked about having kids together and here she is having her third and I'm still very childless. Ultimately, she is one of my most dear and cherished friends and I wouldn't have missed it for the world.

We drove up to their house in Wollaston, Northamptonshire on Saturday. Clare had no idea about the baby shower, she just assumed we were just visiting for the weekend, as we sometimes do. I did think she might find it a little odd that we'd decided to come up the night we had to do our first lot of injections, but she didn't seem in the least bit fazed by this! As soon as we arrived, the four of us went for lunch which was just perfect as I knew I wouldn't get much time to catch up the following day. Usually, on such occasions we might have a cheeky glass of fizz to celebrate our reunion, so this teetotal get-together was a very novel experience for both of us. By 7pm we were all in our pyjamas and Jon and I made our way into the kitchen to prepare the injections.

I think we'd both been contemplating the task in hand for a couple of hours, I was definitely aware that we were a little subdued. We opened up the box of Menopur and laid all 6 bottles plus the two vials of liquid on the counter, it seemed like a lot to mix for two injections. I was happy to let Jon play the role of chemist as well as nurse, but we pondered over the instruction leaflet for what seemed like an eternity before he took and plunge and mixed the first injection. He was being very slow and deliberate, taking time to make sure he had drawn up all the powder from the vials and rid the syringe of any air bubbles. On any other occasion I probably would have ushered him to 'hurry up' as patience is definitely not my strong point and I can be a bit spirited. The next part seemed a lot less complicated than the mixing and somehow, though both a little shaky, we managed to do two injections in my tummy with little fuss. Although this first attempt took half an hour, I felt proud of us.

Yesterday was the day of Clare's baby shower. I felt excited as I couldn't wait to see her face when we walked into the party room but also anxious to be spending a few hours with women I had never met before. I'm not great with all-female gatherings at the best of times, let alone when I'm feeling vulnerable and not particularly sociable. The surprise was fantastic, she bought into the story that we were going for a drink in the local pub and was suitably overwhelmed when she saw all her friends! They were all lovely and although I felt happy to be part of this special day, I soon felt defenseless and exposed. I was the only non-mum round the table and the only person not joining in with the clinking of Prosecco glasses. I even had my own plate of gluten free afternoon tea treats while everyone else shared. I tried my hardest not to come across as a complete arsehole but as the afternoon progressed, I felt like I was clinging to Clare like a small needy child, though she later reassured me otherwise. After all the present giving and games, Jon, Simon and Clare's two boys joined us and I felt instantly appeased by their familiarity. The most important thing to me was that Clare had a fantastic day and the smile on her face definitely made it all worthwhile.

Driving back to London, I felt a deluge of emotions; happy the day was a success, sad that I had to say goodbye to my best buddy but most of all, mentally drained and exhausted.

We did, however, manage to slash the time it took to do our second lot of injections by half. We're now practically pros!

EndoWhat?

Last night I decided to sit down and watch the film 'EndoWhat' with Jon, something I've wanted to do for a while. It's a very powerful, honest, true-life programme, documenting women's struggles to get diagnosed and the crippling conditions some ladies are forced to live with because their doctors convince them their pain isn't real. It's a good tool for women, men, friends, loved ones and also people in the medical profession to really understand the severity of this disease which is almost a complete mystery to mainstream society. The main topics of discussion are diagnosis, beneficial and counterproductive treatments, anti-inflammatory diets, the impact of the rise in chemical usage and infertility.

While I thought it was a really positive, educational film, I've got myself in a bit of a tizzy as I've now convinced myself that having excision surgery before IVF would be my best option, even though I've been told otherwise. I have my first IVF consultation tomorrow so I guess I just have to put my faith in Mr Kalu, but I am a self-confessed control freak and I feel way out of my depth.

If you fancy getting endo educated, here's the link.

In other news, September has seen a positive change for the endometriosis community in the UK. Brand new NICE guidelines have been released for healthcare professionals, commissioners and women with suspected or confirmed endometriosis. This will hopefully result in ladies getting a painless referral through their GPs, leading to diagnosis and more effective management.

Yay for progress!

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.