Natural Products, Nasal Spray & Needles

The last few weeks have flown and I'm already roughly halfway through my five week protocol (originally six weeks but my stupid period had other ideas). I've been through quite a time of it in the three weeks since my last post, some of it completely unrelated to endometriosis or IVF.

I started taking the contraceptive pill in preparation for treatment, which allows the fertility consultant to have complete control over timings of my cycle. It is also said to help the ovaries respond better to the stimulation medication and to decrease the chances of cysts forming which could delay proceedings. It's common for ladies with endometriosis to have ovarian cysts, so while taking the pill seems counter-intuitive, I can kind of see the logic.

During the two weeks I was on the pill, I took the decision to inform my bosses about my IVF cycle. Initially, I thought I might try and go through the treatment without having to tell anyone at work, but after getting some positive experiences from ladies on a facebook group, I decided to bite the bullet. I have two bosses, one of each sex, so naturally I resolved to approach my manager, who is female. I'm not even sure why I was worried, I've been at the company for 11 years and I'm fortunate that Louise and I have a good relationship. I couldn't have asked for her to be more understanding and supportive and as soon as I'd blurted everything out to her, I felt the weight lift off my shoulders. I can't express what a relief it is to have her backing and she promised she would do everything to help make the next few weeks as painless as she could with regards to time off for appointments. She also said she would talk to our Head of Dept and I knew he would be as equally empathetic.

A couple of weeks ago I had an appointment at the ACU for my trial embryo transfer. Part of me was glad to be having this dummy run, obviously if there were complications I'd rather they were flagged now, but what if it was excruciatingly painful? I'd just be worrying and dreading the real thing the whole way through my treatment. As we all know and get told on a regular basis, stress is not good for the process of baby making. Relax and it'll happen! *rolls eyes*

Again, I had to wait an hour for my appointment at Kingston ACU. I appreciate it's an NHS clinic and they're busy but when you have to go into work afterwards and give an approximate time when you might be there, this is extremely frustrating. Especially as my bosses have been so understanding, I didn't want it to feel like I was already exploiting their kindness. While I was in the waiting room I observed a guy looking very uneasy as he walked out holding a metal box containing his partner's eggs, on his way to King's to (hopefully) add his part to the science. I have to admit, this did make me smile.

The procedure itself was like a more painful smear test, as opposed to the nightmare hysteroscopy I had gotten myself worked up about. Thankfully it was over relatively quickly and without complication so we're good to go.

One way I like to unwind and destress is by having a glass of wine (or three). Following on from my abstention of caffeine, I decided to set a date to forgo my beloved Sauv Blanc before I started my down-regulation drugs. I ringed the 8th November in my diary to start my dry couple of months (hopefully longer). We had tickets to see both Kevin Morby at the Electric Ballroom and Father John Misty at Hammersmith Apollo the week before so we earmarked the latter as our last hurrah! Jon has decided to join me in this period of detox, after all, the health of his swimmers is also vital and we're certainly in this as a partnership. We might as well throw everything at this cycle as we only have one shot at this.

I have also been reading the book 'It Starts with the Egg', which I'm sure every IVF couple must have on their bookshelves. Whilst I think it is unrealistic to cut out everything Rebecca Fett mentions, I've been trying to use more natural products in my already pretty basic beauty regime. I found the Faith In Nature range to be reasonably priced compared to a lot of other organic products. I also wanted a fragrance free shampoo, conditioner and body wash ready for egg collection which they also produce.

Last week, I started sniffing Suprecur (buserelin) nasal spray three times a day. I realise this sounds like I have a solvent abuse problem, but it is in fact the next rung on our IVF ladder, the down-regulation stage. It works by acting on the pituitary gland to stop the production of hormones that control the release of eggs from your ovaries. Buserelin is a GnRH agonist drug (alongside Zoladex, Lupron and Prostap to name a few) and because it suppresses oestrogen production, it is sometimes used to treat endometriosis. I was actually looking forward to this stage, to hopefully give my body a break from the pain and bloating if nothing else.

I have read that lot of women suffer with menopausal side-effects while taking buserelin. Apart from the vile aftertaste it leaves in the back of your throat, I haven't noticed too many grievances so far. I'm only a week in so I guess the night sweats won't be kicking in quite yet. I have, however, been experiencing extremely vivid dreams, every goddamn night. And that my friends is an understatement!

I've had issues with my wisdom teeth for the last twenty years. Four days ago I had my second operculectomy to try and solve the problem of constant infections and pericoronitis. I wasn't particularly worried as I've had the procedure before but this time was a whole new ball game! I was stuck in the chair for a whole hour while the dentist completely butchered my mouth. By the time I'd driven into work, the anaesthetic had worn off and the concoction of ibuprofen and paracetamol weren't touching the pain, I sat there drooling and wincing in agony, desperate to get home for a sympathetic hug.

The dentist has made such a mess of things, I inevitably got an infection and had to go back to the hospital the very next day. I've been on antibiotics and a liquid diet for the last few days, which has meant I've lost quite a lot of weight. The whole ordeal has stressed me out so much, I really wish I had waited until after my IVF cycle to go through with it. Hindsight is a wonderful thing!

On a positive note, I've booked my first acupuncture session next week with a lady called Victoria Busk in Kingston. Hopefully this will counterbalance the trauma of this week and normality will soon be restored.

Better Late Than Never

Cycle Day 1

The one time I actually wanted my period to show up so I can start my first IVF cycle, it goes AWOL. I'm usually a regular 28 days kinda gal so the fact that she was a week late was really out of character and quite frankly, bloody stressful! She finally decided to show her ugly face late yesterday, on a Sunday of all days, so I had to wait until this morning to phone the ACU for further instructions. The nurse said if it had been one day later, we would've had to postpone the round for another month, meaning EC would be pushed back until January. The reason being, I have to fit in two weeks of taking the contraceptive pill to regulate my cycle before starting down regulation drugs on the 13th November, if it's less than two weeks, the protocol won't work. I'm just relieved that we are still able to go ahead and have all the treatment before Christmas.

So what have we been doing since our initial consultation last month? Mission IVF is now in full flow and we have ticked off quite a few items of the agenda already.

We've ordered and picked up the drugs from Boots at Kingston Hospital - Maexeni contraceptive pill, Suprecur (buserelin) nasal sprays, Menopur injection vials (stims) and Cyclogest progesterone pessaries. Seeing all the boxes sitting on my kitchen table has definitely made it all seem very real. We've both had all our blood tests - HIV, Hepatitis B & C and Jon has dropped off yet another sperm sample, making sure to keep it warm during the journey! I actually joked about him falling off his bike on the way to the hospital and spilling his precious cargo all over the road, but it probably wouldn't have been that funny come to think of it. I've also booked in my trial embryo transfer for next week. I just assumed this was commonplace but after speaking to a few women online, it seems that this isn't the case. I'm now worrying whether it'll be painful, given my history with painful smear tests and hysteroscopies.

I've bought myself a beautiful IVF diary from Bearface Prints, as you can gather by now, I like to document things. I wrote a cringeworthy journal every day as a teenager and was mortified when one day my Mum found it under my bed when she was having a good tidy. I later found out that she also keeps a diary so I guess it must run in the family! There's space to record all the medication dates which is extremely useful for me, if I don't write everything down, I'll most certainly forget. There are also pages for you to log how you're feeling at certain times during the process. It came with a lovely personalised note from Natalie the store owner, who has obviously been through IVF herself. The diary has certainly been made with a lot of thought and love.

I have also given up caffeine, which has actually been a lot easier than I anticipated. I swapped the humble English Breakfast bag or BST (Bog Standard Tea as my mother-in-law calls it) for peppermint tea a few years ago due to my stomach issues, but I do love a good coffee, especially first thing in the morning. I would even go as far to say, like many of us these days, I'm a coffee snob. There is one brand of instant that I'm more than happy to drink and luckily it also comes in a decent decaffeinated form...

So there's my tip for anyone struggling to find a nice decaff. Nescafé Azera 'Barista Style' Instant Coffee is going to be my saviour over the next couple of months!

As much as I'd love to sit here and write an entire entry dedicated to coffee, there are more pressing matters presently at the forefront of my mind. As I mentioned at the start of the post, today is (finally) cycle day 1, which means the start my IVF protocol. Wish us luck!

Sunny Days

We've had a really busy summer so far this year, it's been lovely to immerse ourselves into doing things we enjoy doing, rather than thinking about the worries of the last few months and the inevitable stress that will come later in the year when we start our IVF journey.

It has been unseasonably warm for weeks, with no sign of the Great British Summer that we all know and (not) love. Even when I have bad pain days, when the sun shines, so does my mood - everyone knows I'm a sun-worshipper! I've had a few horror days over the last couple of months, but thankfully these have been far outweighed by the good ones and I believe this is down to good old vitamin D.

I've enjoyed cocktails at the top of The Shard, dinners with friends, a day at the golf, a BBQs at home, a hen weekend in Brighton, our annual caravan weekend in Dorset, my very first DRY Glastonbury Festival (weather, not alcohol), a weekend at Centre Parcs with the girls, a day at Wimbledon (not working for once), a couple of concerts (Mac DeMarco & Guns N' Roses) and we met our friend's brand new beautiful twin girls. That's quite a lot in two months but I wouldn't change anything, it's almost as if we've enjoyed ourselves to the absolute maximum before we start our travels on the unknown road ahead of us.

One of my best friends, Clare (who I've known nearly forever), also told me she was expecting her third child. Although I'm completely over the moon for her and her partner Simon, I can't help but feel a huge pang of sadness for ourselves. A few of my friend's pregnancy announcements have hit me hard over the last few years, especially those who are having their first as it means one less friend in my Non-Mum network, but this one was particularly tough. We often said that maybe we would be pregnant at the same time, she was thinking about her third child and she knew we were trying too. Now another bump buddy boat has sailed. So many of my friends have now completed their families and I feel if we ever did have our miracle baby, I'd have no-one to enjoy my pregnancy with.

Last weekend I enjoyed, for the most part, a tranquil break with the girls at Center Parcs. Most of my oldest friends live in Norfolk where I grew up, but Clare and I live in different parts of the UK, so it's rare that we all get together, especially with no husbands and children! Of course this was the weekend that my dearly beloved Mrs Menses decided to show up and pretty much destroy any hope of a relaxing weekend. Luckily, I managed to squeeze in an afternoon at the spa before she barged her way into my plans. The following day was one of the worst pain days I've had for a long time. I spent the majority of the day curled up in my PJs on the sofa, necking NSAIDs like they'd gone out of fashion. I managed to join the girls in the pool later in the afternoon, albeit with what felt like a watermelon under my swimwear, but at least I managed to leave the chalet for a couple of hours.

I've found myself at times, especially after a bad flare up, thinking about further surgery to completely free myself from the pain that comes with having severe endometriosis. I can't say I've noticed an improvement in my symptoms since my laparoscopy earlier this year, so apart from having the abnormality in my uterus removed, I'm wondering what good it has actually done. Mr Kalu has said this is definitely something I should consider after I've finished with my fertility journey, but because surgery can create adhesions which would potentially affect my fertility further, he has advised against anything drastic until then.

I've been reading a bit online about this and I've discovered because I have Stage 4 endometriosis, I am entitled to be referred for full excision surgery at an accredited BSGE centre. There is a list of centres on the website and I've already started looking at my options for the future.

In the meantime I'm stuck in limbo.

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?!