The Two Week Wait

Today marks the halfway point of my 2ww before I find out if I'm with child for the first time ever. While I'd like to report I've been blooming and a joy to be around, this would be a barefaced lie. It's been mental torture and the progesterone supplements I've been prescribed are HELL.

Progesterone, often called 'the pregnancy hormone' (or horror moan as I've renamed it), is produced by ones ovaries after ovulation and it's job is to prepare the lining of the uterus for implantation. Ladies going through assisted reproduction treatments are prescribed progesterone supplements because the egg retrieval process removes cells that would normally create progesterone. The supplements, usually in pessary form, are needed to thicken the lining so the embryo will hopefully implant and grow.

I started taking progesterone pessaries (1 x 400mg Cyclogest, morning and night) from the day of my EC and the next day I was already feeling unsettled. This might me a little TMI for some so feel free to skip this paragraph, but pessaries are messy little buggers and I'd been using the back door to try and limit the pants puddle. Unfortunately this has played havoc with my stomach and the pain from trapped wind and bloating has been excruciating at times. To cut a revolting story short, I’ve tried alternating but now I've had to switch to using solely the front door which has relieved my symptoms a little, although creates a lot more mess. It's the lesser of two evils, though for me it's a close call. The great pessary debate is something that's always discussed within the #ttc community online but ultimately it comes down to personal preference. While there are pluses and minuses for both arguments, I think you just have to suck it (or stick it in) and see, there is no right or wrong orifice!

The other twisted and perverse thing about progesterone is that the side effects mimic early pregnancy symptoms. So far I've experienced intense cramping which is similar to period pain so I'm on constant knicker watch, bloated tummy, sore boobs and the one that tops the rest - thrush. This really is not convenient when you're trying to shove pointy, waxy bullets through an area that feels like a furnace, shoot me now.

This has all been a bit of a head f**k, but I've also had some news from a friend which has quashed my already waning positivity. For the last few weeks I've been in regular contact with a couple of ladies going through the 2ww around the same time as me. While this is good thing because it really is a massive support to be able to vent about symptoms with women who know, it's also really sad when the first one to test gets a BFN. Unfortunately, three days ago, this is what happened to my friend Sarah, though she had her suspicions a few days before. You have all these ideas that we're all going to get our BFPs and we're going to go on to be pregnancy buddies but then reality kicks in - this might not work. My other pal, Vicky, is due to test the day before me so I have everything crossed for her. This process really is torture.

So apart from emotional trauma and pessary issues what have I been up to during my 2ww? I've actually been trying to keep things as normal as possible. I took the day off after transfer and went for my third acupuncture appointment in Kingston, Victoria focused on blood flow this time and I nearly drifted off to sleep during the Zita West meditation. I felt so floaty after my session, I decided I was in the mood to do a little bit of shopping and even allowed myself to feel a little bit festive (very unlike me!). The next day (after feeling guilty about over doing it walking round the shops) I went back to work, partly because I wanted to get back to normality so my mind didn't implode but mainly because I had no holiday left.

Last weekend we bought a Christmas tree and decorated the house, which is very early for us! I enjoyed a lovely (alcohol free) dinner with friends at Côte in Wimbledon which was a welcome distraction from symptom checking and the negative thoughts that have started to creep into my head. Over the last couple of days I've been analysing every twinge, cramp or peculiar feeling as my period is due any day now and I've started to go into panic mode; rushing to the loo to check everything is in order every five minutes. Poor Jon must be really fed up with me now as the more anxious I've been getting, the more clingy I've become; my need for cuddles extreme! I've also been having completely irrational thoughts, such as thinking my bloated tummy is crushing the embryo. What fun!

One week until test day.

Recovery

My friends have been fantastic. I hadn't really talked about endometriosis or the fact I was going into hospital with many people before the laparoscopy, 1) because it hadn't been confirmed and 2) I was only just getting my head around it. During my time in hospital, after Mr Kalu had given me the diagnosis, I had time to digest what I'd been told and I decided that I didn't want to hide anything from my friends and family. I think the reason endometriosis isn't widely understood is because nobody appears to be talking about it - why is it a taboo subject? Conversations since my diagnosis all follow the same path, or rather, cul-de-sac. Everyone seems to know someone who has endometriosis - a friend, a friend of a friend, a sister of a friend, but that's as far as their observation goes.

No sooner had I arrived home after the operation, I was delighted to get a visit from my friend Helen and her little girl Sophie. It temporarily took my mind off the pain as my incisions were starting to get very uncomfortable, especially where the laparoscope went through my navel. The messages coming in from friends were so supportive, I was glad I'd made the decision to share my diagnosis with my nearest and dearest. Over the next few days more cards and flowers arrived and despite feeling dispirited, I was definitely feeling very loved.

I found the pain to be manageable with paracetamol and ibuprofen every few hours for the first couple of days. I had codeine from the hospital on standby but I only wanted to use this as a last resort. I was feeling incredibly bloated and already quite constipated so I didn't want to exacerbate this by throwing codeine into the mix.

It took much of the first week to recover from the effects of the anaesthetic. It felt like I'd been given quite a high dose as I was drowsy and fatigued a lot of the time. One minute I would feel bright as a button, then followed a surge of lethargy that I couldn't shake. The nodding dog was back. I tried to get up and walk around the house as much as possible to try and reduce the swelling in my stomach as this was by far the most uncomfortable part of the recovery process - I can only compare it to feeling like an over-inflated balloon, ready to burst at any given minute. That paired with the pulling sensation on my incisions made getting up and sitting down a little tricky, especially for the first couple of days. I soon adapted to using a swivel motion and my arms to push myself up rather than my abdominals - those muscles were in hiding anyway.

Another issue I was struggling to cope with was the heavy bleeding. I put this down to my uterus having to accommodate this new contraption and the surgery rather than a bulky ten day period. Having been on the pill for so long, I wasn't used to so many days of continuous copious bleeding and I wasn't dealing very well with having to revert back to using sanitary pads. It had been 20 years since I banished the cumbersome days of big knickers, it felt like I was regressing. To put it bluntly, I felt gross.

Scarlett had most definitely returned to Tara.

The pump in my shower unit decided to inconveniently give up the ghost just before I went into hospital and it was a few days before we could get someone in to fix it. I was told not to have a bath for a week after the operation as the wounds aren't supposed to be submerged but unfortunately there was no other option. I felt horrible enough, I certainly wasn't going to go cold turkey on cleanliness. For the first few days, I had to get Jon to help me wash my hair by sitting in a very shallow bath and doing, only what I can describe as a back breaking yoga pose to prevent the dressings from getting saturated while he poured jugs of water over my head. I still had the waterproof dressings they put on in hospital and I was keen to leave these on as long as possible, or at least until the shower was fixed.

Five days into my recovery and I was irritable and gloomy. I hadn't been able to go to the toilet since before the laparoscopy and I was feeling fat and heavy. It was though I had a ball and chain attached to me, although the lead weight was in my tummy instead of round my ankle. I was itching to get out, but I didn't feel quite well enough to leave the house.

I'd had enough of trying to sleep on my back but my usual curled up foetal position was too uncomfortable with the bloat and the stitches. I was also having very peculiar and somewhat eerie dreams, which I put this down to the hormones I was taking. Another side-effect was night sweats, I don't mean waking up feeling a little bit clammy, oh no no no - I'm talking full-on dripping wet bed sheets. And there was me thinking that HRT was supposed to manage menopausal symptoms!

I filled my recovery time watching episodes of Girls, which I didn't know until later is created by and stars Lena Dunham who also suffers with endometriosis. When I was feeling a little perkier, I started researching the jargon of my diagnosis letter (next post) and poured over information and forums on the internet. I was amazed by how many websites there are on the subject. There are so many women with such debilitating symptoms, I began to feel lucky that I've been able to live a relatively normal life. I joined facebook support groups and spent hours reading everyone's stories. This was when I decided to write my own blog, to really understand my symptoms starting at the very beginning. I trawled through all my old GP and hospital letters, piecing things together bit by bit until I had a timeline of events. The light bulb in my head was slowly getting brighter.

Over the next few days I started to feel a little more human and my swollen stomach started to slowly deflate. After five days of taking a cocktail of Movicol and prune juice, I thankfully managed to pass the smallest of poops so that was a start. In the days that followed, I became more active and could now walk around the house and carry out basic chores with relative ease. A week after my surgery, I decided to change my dressings as they were starting to irritate me, plus I wanted to take a peek at the damage. I was pleased with the two abdominal incisions, they were only a centimetre wide and looked like they were healing nicely. However, the neat little inward belly button I've been used to for 36 years had changed quite dramatically. In its place was, only what can be described as a bottom shaped outie - I was horrified! I told myself that it was still early days and I should give the wound a chance to fully heal before mourning my naval.

Ten days after the laparoscopy and I was still experiencing quite a lot of discomfort, despite being a lot more active and the diminishing bloat. Some days I felt so cramped and knotted up inside, I couldn't eat anything. I was also getting stressed with what seemed like eternal bleeding - I didn't have enough big knickers to cope with this many days so Jon had to take a trip to M&S to stock up. I longed to be free of it.

I found that searching the internet can also have its disadvantages, a lot of medical information just isn't true. I started to make connections between endometriosis, HRT and the increased risk of cancer. I also read many reports that endometriosis is also connected to fibromyalgia - a condition my mother suffers with. I brought this up with Mr Kalu at my follow-up appointment two weeks post-op and he dismissed this information immediately. He flatly told me to stop reading material on the web and put any concerns I had directly to him. I must admit, I felt a little foolish.

I felt a lot more positive following my consultation. He was pleased with how I was healing and we discussed the surgery he had carried out in more depth (cue another drawing). After listening to my explanation of the symptoms I've had since I was an early teen, he expressed that I've probably been suffering from endometriosis for all of my reproductive years. If I hadn't been investigating my fertility issues, I may not have ever uncovered the condition. He booked me in for another procedure in a few weeks so he could check on my internal progress - this would involve a hysteroscopy and thankfully no incision surgery. In the meantime, I was to carry on taking Progynova (oestrogen) and in a few days to start a course of Provera (progesterone) three times a day to induce a bleed. Another f***ing bleed. My positivity was short-lived.

Over the next few days, I advanced from wearing leggings to jeans, my stitches fell out, I went back to the gym and I returned to work. Initially, I felt quite vulnerable after each of these milestones, but as with everything new, it takes a bit of getting used to. It was definitely progress.

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.