Down-Regulation Scan

The witch arrived a few days ago. On one hand this is fantastic news because it means I can go ahead with the next stage of my treatment, the flip side, I've been suffering with the usual stomach cramps and trauma that comes with this time in my cycle. Pair this with a tortuous liquid diet and a throbbing hole in my mouth where my gum used to be and you have a perfect recipe for self-pity and utter misery.

Once I'd manage to pull myself out of my pit of gloom, I booked my down-regulation scan for this morning. This was another internal ultrasound scan (hello Wanda!) which is carried out to ensure that my lining is thin and my ovaries are quiescent after the down-regulation phase (in my case, sniffing). My scan today confirmed both so we're finally ready to start the stimulation stage.

I don't have a phobia of needles, I can quite happily look down at my arm during a blood test, but something about self-administering fills me with complete fear. I had asked Jon during a conversation a few weeks ago if he could do the injections for me. Unsurprisingly, he wasn't particularly keen but unfortunately it is a necessity so one of us has to be brave. As I'm the one getting punctured, it seems only fair that he plays the nurses role. "It'll be nice for you to be involved at this stage" I keep telling him!

As I mentioned in a previous post, my stimulation protocol is 450IU of Menopur, the highest approved dose in the UK. Menopur comes in vials of 75IU so I need six of these mixed with two bottles of solvent, this means two injections with 225IU in each. After the scan a very steely nurse (that's being kind, she had no compassion whatsoever) showed us how to mix the injections and she administered the first two, one in each thigh. It actually stung more than I was expecting so I think we're going to try in my tummy tomorrow night, there's definitely more flab to grab there!

I read the patient information leaflet a few days ago and aside from the usual instructions on what to do if you take too much/miss a dose/get DVT, I came across this section:

1. What Menopur is and what it is used for
What Menopur is
Menopur contains a medicine called menotrophin. This is a mixture of hormones obtained from the urine of women who have passed the menopause.

WTF?!

Today was another one of those days crammed full of appointments. After my first injection lesson, I scooted across SW London for another dental check-up in another hospital with yet another dentist. She admitted the lady who had performed the surgery nine days ago had made a bit of a cock-up (not her exact words) and my gums were a mess. Fantastic.

I also went to my first acupuncture session which I thoroughly enjoyed and found very relaxing. Victoria spent a long time going through my health and fertility history before deciding on which areas to concentrate on. I don't know if it's going to improve my chances of IVF success, it did however, make me feel less stressed and more calm, which has got to be a good thing.

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.

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.

Tough Mudder Legionnaire

Two days ago I completed my second Tough Mudder© event. This was an achievement in itself (or maybe an act of sheer madness) but even more so with the uninvited guest that rudely showed up that morning. I'd woken up feeling nervous and excited but those feelings were soon replaced with horror - my good friend Flo was 8 days late and she had chosen THAT day of all days to make an appearance. F**k.

The inevitable bloating and cramps soon followed so I dosed up on analgesics alongside my protein packed breakfast and hoped for the best.

I managed to control the pain fairly well during the event, there were only three of us so we flew round the 10 mile course in under 2½ hours. There are certain times where being vertically challenged has it's advantages and doing any kind of team assault course is definitely one of them. I watched 15+ stone men trying to squeeze through small tunnels whilst I sailed though, I was never short of volunteers for a leg-up over the 10ft walls either!

Later that evening, I was curled up in agony wondering what on earth I must have done in a previous life to deserve this torture.

Hysteroscopy Recovery

This time round I was signed off for a week, initially this was two but managed to I negotiate Mr Kalu down - he looked at me as if I was crazy! I felt terrible for already taking so much time off from work this year and I didn't feel I would need more than a few days. The procedure was invasive, but the healing was all internal - no complications with stitches and dressings.

The day after the operation, my mood had improved and I started feeling more positive about the things. As with everything in life, crappy situations always seem heightened when you're lacking sleep and that night I managed to drift off very easily. I guess I was still trying to get my head around the diagnosis, what it meant for me and what other hurdles the future would throw in my path. As the week went on and I was feeling slightly more human, I had time to take stock and reassess what had happened over the last few months.

While I was recovering and trying to process and make sense of my newfound situation, I slowly started to feel frustrated and irritable. The internal pain was fairly short-lived but the emotional strain from bleeding heavily for two-thirds of the month before and after the operation started to get me down. I'll spare you from too many details this time but the post-op tampon embargo meant yet another trip to the M&S lingerie department, I was now getting quite a collection. My digestive system really struggled too, sometimes completely grinding to a halt for a few days then whirring back into action with accompanying cramps in every place imaginable, crippling stomach ache and bouts of nausea. The bloating was constant and I found wearing anything other than leggings unbearable. Ironically, I looked pregnant which was a twisted kick in the teeth, seeing as that's what I've been aiming to achieve for the past 3½ years. The resentment towards this disease and every GP who has misdiagnosed me over the past two decades is slowly augmenting as I understand more and more about bloody endometriosis.

Yesterday, I had my post-procedure follow-up with Mr Kalu. I explained my womb worriment and he vehemently reassured me the septum tissue hadn't grown back and will not ever grow back in the future (duh, it's fibrous tissue!). Although I felt a little stupid, I was hugely relieved. He was actually really happy with how the operation went and wants me to carry on with the oestrogen (HRT) and progestogen medication until I see him next month. ROLL. ON. MAY.

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.

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?!