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!

IVF Lingo

Since our initial consultation, it's no surprise I've fallen head first down the IVF rabbit hole. I've immersed myself in facebook groups and been reading up a lot on the matter in hand. Most of it has baffled me as it seems like a completely different language! I've also been in touch with a couple of other ladies, Sarah & Vicky, who are cycling around the same time as me and they've been great at keeping my head above water and offering advise.

I've made up a list of the most commonly used terms and abbreviations which might help you understand what I'm talking about over the next few months. It's a lesson for me too.


2WW  Two Week Wait (after ET and before OTD)
6dp3dt  16 days past 3 day transfer
AF  Aunt Flo (period or menstrual cycle)
AFC  Antral Follicle Count
AH  Assisted Hatching
AMH  Anti-Müllerian Hormone (indicator of egg reserve)
BBT  Basal Body Temperature
BCP  Birth Control Pill
BD  Baby Dance (sexy time)
BFP/BFN  Big Fat Positive/Negative (result after POAS)
CD  Cycle Day
CM  Cervical Mucus (my personal favourite)
EC/ER  Egg Collection/Retrieval
ED  Egg Donor
ET  Embryo Transfer
FET  Frozen Embryo Transfer
FMU  First Morning Urine (most concentrated wee)
FRER  First Response Early Result (pregnancy test)
FSH  Follicle-Stimulating Hormone
HPT  Home Pregnancy Test
ICSI  Intracytoplasmic Sperm Injection
IF  Infertility
IUI  Intrauterine Insemination
IVF  In Vitro Fertilisation
LH  Luteinising Hormone (triggers ovulation)
LP(D)  Luteal Phase (Defect)
MF  Male Factor (male IF)
(M)MC  (Missed) Miscarriage
OHSS  Ovarian Hyperstimulation Syndrome
OPK  Ovulation Predictor Kit (another POAS)
OTD  Official Test Day
PCOS  Polycystic Ovary Syndrome
PG  Pregnant (if only)
POAS  Pee On A Stick
POF  Premature Ovarian Failure
PUPO  Pregnant Until Proven Otherwise (during the 2ww)
Stims  Stimulation Injections
TSH  Thyroid Stimulating Hormone
TTC  Trying To Conceive
US  Ultrasound (new best friend)

So there you are, a little insight into the TTC online community!

First IVF Consultation

Tuesday 26th September 2017
Kingston ACU
Kingston Hospital, London

I was excited but a little nervous while we were waiting for our first IVF consultation at the same hospital I'd been treated at a number of times this year already. The clinic was running late and we had a long wait before we were called into the appointment, which didn't help the with the feeling of imbalance. I couldn't help but look at the other couples in the waiting room, I suddenly wanted to know all their stories. As you can imagine, the demographic was fairly predictable - couples in their late 30's to early 40's.

During the consultation with the Senior Fertility Specialist, Miss Despina Mavridou, we had a baseline scan, which is an internal ultrasound to determine my antral follicle count (AFC). The scan showed a very small number of follicles, two on each ovary to be precise, and my left ovary was tucked high up behind my uterus with little mobility. She discussed that it could potentially be difficult to access at egg collection. I started to feel like we were already fighting a losing battle and we hadn't even started the treatment yet - endometriosis has a lot to answer for! Due to the low AFC and previous blood test results detecting low AMH and elevated FSH levels (a good indication of a woman's ovarian reserve), they decided to put me on the very maximum dose of stimulation drugs. We then went through a number of things in detail, including the reasons treatment might fail, operative risks, side effects and the predicted percentage of success (20%), which I thought was quite high, all things considered.

I'd already started to feel very overwhelmed with information to process but this was nothing compared to how I felt after the second part of our appointment. After a further short wait we were ushered into another room to see lovely nurse Laura MacGreggor to go through a phone book worth of HFEA consent forms that we had to sign and date. This was in fact a contract between the two of us and the clinic outlining all kinds of morbid but necessary scenarios such as:

Do you consent to embryos created before your death being transferred to your partner after your death, and to being registered as the legal parent of any child born from your partner’s treatment after your death (ie, posthumous birth registration)?

We then went through our IVF protocol, highlighting key dates over the next three months. I was frantically trying to scribble everything down as I was so concerned I might mess things up if I had forgotten a vital piece of information (my short-term memory is non-existent). Key things I managed to scrawl on the back of the appointment letter were:

• Order the IVF medication from Boots
• Have blood tests (HIV, Hepatitis B & C)
• Jon to provide (yet another) sperm sample
• Ring clinic to book a trial embryo transfer (due to previous womb history)
• Start taking a birth control pill (they know I'm trying to get preggers right?)
• Start sniffing another drug to turn off my ovaries (see above)
• Phone in to book 1st scan (down regulation)
• Start injecting stimulation drugs
• Egg collection under sedation (preferably knocked out)

Laura then explained that the real embryo transfer would be at a different site at King's College Hospital in Denmark Hill. This means that within minutes of my egg collection, Jon will be handed a medical transportation box (fridge) containing my lovely eggs and he'll have to hotfoot it over to King's on the train where he'll then do his his part of the bargain. The following day, we'll hopefully get a call telling us the magic has happened and we have some beautiful little embryos in a petri dish.

Holy moly.


Guy's Hospital, London

As if my mind wasn't frazzled enough after our consultation, I decided to go to my first ever Endometriosis UK support meeting that evening at Guy's Hospital. I'd joined the London facebook group a few months previous and I'd already gained a lot of information but I wanted to meet ladies in the same position I now found myself in. Jon came with me for moral support as I was feeling very anxious about the session. I'm naturally very shy, especially in situations where I'd be meeting someone for the first time, so this was completely out of my comfort zone. Not one new person, but a whole room of new ladies all with one shared condition.

It turns out I had more than one thing in common with a couple of the ladies there that evening and towards the end of the discussion, a question about infertility and IVF was presented. At the end of the evening I got talking to Tijen and Kelda, both of whom were about to start the IVF process, we swapped email addresses to keep in contact over the next few months. I was aware I was talking really intensely as I blurted out my story to them, I'd had so much information to process that day, I was feeling extremely vulnerable and overwhelmed. On the way home, I had a chance to contemplate everything and I felt happy I had two people I could now talk to.

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!

Carefree in Croatia

I'm at my most content when I'm travelling and this trip couldn't have come at a better time. It was bliss to leave all the cycle tracking, temperature taking, peeing on ovulation sticks firmly back at home and have a proper break from everything fertility related.

It was the first family holiday I've been on since I was a teenager almost twenty years ago so I was especially eager for this trip to come around. My mother had never been on a plane (my father was scared of flying and they used to travel everywhere by boat or train) so I was also excited to see her reaction to the maiden flight. I was also looking forward to spending some quality time with my brother, even though we see a lot of him as he currently lives with us, we rarely go away together.

The flight from Gatwick to Split was typically one of the most turbulent I've experienced, I was trying to appear calm (whilst gripping the life out of the armrests) as I was sitting next to Mum and didn't want to alarm her. She didn't seem the least bit bothered of said disruptions and was far too busy taking photos out of the window the whole way there!

Croatia was stunning. After spending two days in Split, we hired a car and drove north to Plitvička Jezera as we wanted to visit the famous Plitvice Lakes National Park. The chain of terraced lakes and waterfalls was one of the most picture-postcard perfect places I have ever had the pleasure of seeing. Even though it was heaving with tourists, it felt peaceful walking along the boardwalks next to the crystal-clear water and I was happy to take in the beautiful scenery whilst contemplating our upcoming journey.

Two days later we drove back to Split and boarded a boat for Hvar island, I'd found an AirBnB apartment in a sleepy little town called Jelsa a few weeks previously. It turned out to be quite basic (I might have miscalculated the bedrooms and Jason had to sleep on sofa cushions in a tiny room adjoining Mum's) but it had a pool and after a few days travelling we all needed a bit of chill time. We had the terrace and pool to ourselves all day and I realised it was the first time in months that I felt completely at ease (did I mention I love the sunshine?) I suddenly regretted not booking more time in Jelsa as the next few months, I'm assuming, will be far from the calm we experienced on Hvar island.

We arrived home after a few more days seeing new beautiful places - we met with Jon's parents on another Adriatic island (Mljet) and spent time in lovely Trogir.

We are finally ready for our next journey. Bring it on.

Shit Got Real

Only 2½ weeks after receiving the initial referral later we have a date for our first IVF consultation at Kingston Hospital ACU. The bad news is, it's booked in for when we're on holiday in Croatia next month. The good news is, it was easy to change and we have a revised date of Tuesday 26th September. I'm surprised that it's been such a short wait, Mr Kalu said there might be a three month delay so I wasn't expecting it so soon. This has sprung up on me a little and I'm feeling a quite overwhelmed by it at the moment. I know it's going to be tough physically and mentally and now I have to start preparing for the ordeal I'm going to be putting my body through. All kinds of questions are going through my head - how will my endometriosis react to the hormones? What if it doesn't work? We only get one round free round on the NHS but I'm grateful for that as many CCGs (Clinical Commissioning Groups) don't provide any funding for IVF. Earlier this year Croydon CCG became the first London CCG to entirely decommission IVF services, whereas if your GP surgery is in Camden you could receive three free cycles. It's an extremely unfair postcode lottery.

There's been more and more Endometriosis media coverage lately, some completely inaccurate (you can guess the culprits who commonly use scaremongering in their journalism) but most have been really positive and informative. Today's Women's Hour programme on Radio 4 is definitely worth a listen if you have a spare 15 minutes.

Turning Thirty-Seven

We've just returned from a fantastic road trip around Scotland. The lovely weather has surprisingly carried on well into July and our week across the border was just glorious (yes, really!). Our Scottish jaunt actually started with a night in Newcastle before driving up to Fasque Castle in Aberdeenshire for a few days celebrating the wedding of our friends, Jake & Laura.

After a mad but definitely fun-filled few days partying with the Scots in Fettercairn, we made our way down to Edinburgh for a couple of nights. We did a lot of walking and it was lovely to spend a couple of days just the two of us before heading across to Glasgow (via the Trossachs and Loch Lomond) to see friends.

On our way back down to London, we stopped for a final night in Liverpool to celebrate my birthday (a day early) with our friends Rob & Gill. They announced they were getting married on my birthday next year! Whilst we were celebrating with copious amounts of prosecco, it got me thinking about where we would be in a year from now - I could be pregnant.

We drove back to London the following day, the journey took what seemed like a lifetime because we'd been up late and I might have had a wee hangover. I've always liked to celebrate birthdays but they also bring a stark reminder that another year has gone by without being able to conceive. Relieved to be home, we made a cup of tea and started going through the post that had built up over the last week. Hidden within the pile of boring bills and take-away menus was the best birthday present ever... our IVF referral letter!

Yesterday, we continued the celebrations by having a BBQ at our house. Even though there was a deluge of rain which persisted all day (summer is officially over - boo!) I had such a fantastic day. Buoyed by the letter from Kingston ACU and good-spirited friends crammed into our kitchen, it was another birthday down but one to remember.

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.

Outpatient Hysteroscopy

Wednesday 28th June 2017
Kingston Hospital
Roehampton Wing

Today was attempt two of my 'clear out' hysteroscopy. I won't go into the reasons why the first one that was booked at the beginning of the month was cancelled, let's just say it was an misjudgement on my part. This was my first outpatient hysteroscopy so I had no idea what to expect or how uncomfortable it would be. I assumed as there were no offers of any sort of anaesthetic, it would be similar to experiencing sharp period pain or an HSG. Oh how wrong I was.

On arrival, a trainee doctor named Lisa greeted me and showed me to the consultation room where Miss Al-Shabibi was waiting. I later learned she is the lead in Outpatient Hysteroscopy at Kingston, I really wish I'd been privy to that information pre-op as it might've helped relax me a little! She explained everything that would happen and I signed the papers. I stripped and changed into the gown and followed the two lady doctors into theatre. Here, two more nurses were waiting for me and I felt very comfortable surrounded by a gaggle of women. Girl Power, or so I thought. Soon I had my legs resting in the stirrups, and liquid was injected into my cervix to widen it ready for the hysteroscope. I was comfortably chatting away to Lisa about work, my crappy commute, blah, blah, blah and then... a sharp stabbing pain so bad it took my breath away. I'm not exaggerating when I say it felt like she was jabbing me with a red hot poker. My chatter was soon replaced with yelps, cries and short, sharp breathing in between whimpers. I suddenly knew how it felt to be a Looney Tunes character, eyes on stalks and steam coming out of my ears, I certainly must have looked crazy! I was already holding (squeezing) Lisa's hand, now one of the other nurses quickly came round and offered her hand on my other side as she could see and hear my distress. As the hysteroscope was being inserted the pain was getting progressively worse. I was struggling to picture anything else apart from that torture tool.

Mrs A-S: "Look at the camera images, you can see one of your tubes"
Me: (Not looking and the screen) "Aaaaaaaargh"
Mrs A-S: "And there's your other one"
Me: (Turning to the screen for 2 seconds) "Aaaaaaaaaargh, how much longer?"
Mrs A-S: "Not long now, I'm just tidying up"

After what seemed like an eternity but in reality was only a few minutes, it was thankfully over. As soon as she pulled the Devil Device© out, there was almost instant relief, although some of the pain was still there, the pressure was greatly reduced. She seemed surprised at this which baffled me at the time.

After changing back into my skivvies, now with standard-issue hospital nappy pad, I was back in the consultation room. I found myself suddenly feeling embarrassed and started apologising profusely for being a baby. Maybe I was having a low-pain threshold day, or maybe it's due to my suspected adenomyosis or because I'm due on my period any day now? Whatever the reason, I did not feel good. I pride myself on how well I cope with most situations and now I felt like a failure. After trying to reassure me, Miss Al-Shabibi explained that she was extremely happy with how everything was looking, but she had removed a little more of the septum tissue that was left. There were no adhesions and it looked very clear which was a huge relief - no clearing of the cobwebs required. She told me she would report back to Mr Kalu and he would be in touch about the next step. And that was that, I was on my merry way, albeit walking like a rustling John Wayne. Stupidly and naively I hadn't taken any pain relief pre-op and I certainly needed it now, so I popped into the pharmacy on the way out. By the time I'd driven home, the Nurofen was kicking in and I felt a little more comfortable. Inevitably, as soon as I removed the ridiculously over-sized nappy, the floodgates opened. Bloody marvellous.

After settling on the sofa in my PJs for the evening, I started reading forums about women's experiences of having a hysteroscopy without anaesthesia. There's even a Facebook page called Campaign Against Painful Hysteroscopy! I found a vast spectrum of stories ranging from people who said it was merely uncomfortable to women whose procedure had to be abandoned because it was so painful and carried out at a later date under a general. Some women even said it was worse than childbirth! I felt a bit better knowing I was somewhere in the middle with my experience, I was just relieved it was over, I do not want to go through that again.

EVER!

11.04.18 - Update from Campaign Against Painful Hysteroscopy Facebook page

It's good to see Patient website being truthful about the risk of severe pain during outpatient hysteroscopy. We need ALL NHS gynae clinics to provide honest patient information leaflets warning of % risk of severe pain and giving the option of sedation or GA...

https://patient.info/health/hysteroscopy

Me: If you're about to have an outpatient hysteroscopy, I would advise you head to the Will it hurt? section and make sure you go through these points with your gynaecologist before the procedure. I can't stress enough, knowing what I know now, that if I was given the option of a GA I would accept it every time. At the very least they should be offering you sedation, please bear this in mind. That said, I have since spoken to ladies who have had no problems so don't take my experience as gospel, just be prepared.

Copper Coil

Yesterday, was another day of firsts. I ran my first ever Park Run and experienced my first ever coil removal sans anaesthetic - go me! The Park Run was a success, as in I completed the 3 mile course in less than half an hour, but unfortunately I was in pain the whole way round and suffered cramping for some time afterwards. Nevertheless, I felt a sense of achievement and the endorphins put me in a good mood for the day ahead, despite being overtaken by a man pushing a buggy (maybe more than one).

Later that day I had my final appointment with Mr Kalu before he was going to refer us for fertility treatment. We talked about our options and how he thinks referring us straight for IVF is our best chance given my age and the severity of the endometriosis. He said he would refer us as soon as I've had another hysteroscopy to have one final look inside my uterus to check for adhesions and a final clearing of any cobwebs. There is currently a three month waiting list at Kingston Hospital for IVF so all being well, I'll be able to start treatment at the end of the summer. Whilst, I'm not relishing the prospect of having yet another procedure, I'm looking forward to getting our fertility journey underway. After a few months of setbacks, things seem to be finally heading in the right direction.

Mr Kalu then informed me he was going to remove the dreaded coil. Gulp. Although this was my second IUD, I'd never been awake for insertion or extraction before so as I lay on the bed with my legs akimbo, I was a little tense to say the least. I could feel it scraping every millimetre of my cervix as he was pulling the wretched thing out, I can now see why women only have them every 5 years!

After a few minutes of chat while I was fumbling around for my underwear, which were of course tucked neatly under my leggings on the chair (I have no problem with a doctor studying my floodlit private parts but there's no way he's going to see my knickers), I asked to see the coil that he'd just removed. This is what he removed from the waste bin...

I'll just leave that there with you.