Zzzzzz.

All I want to do at the moment is sleep and eat.  I nearly fell asleep on my way home from work earlier, which wouldn't be so bad except I was walking.  I also walked headfirst into a tree branch.  I came home from work last Friday and went straight to bed, thinking I was getting sick but it's Tuesday now and nothing has materialised.  Hopefully my body is fighting off some bug that hasn't shown any symptoms and it'll go away before they have chance to show up!

I was trying to think of an interesting blog topic - I had a title in my head last night but I can't for the life of me remember what it was.  Apparently my brain is functioning about as slowly as my body right now.

Ah well, better luck next time!

IVF & Intimacy!

I've broached this subject in an earlier post, during the ovarian stimulation phase but it's arisen again.  As I had egg collection on 5th September and we are not planning to start out FET until my cycle in November I thought we'd get back to intimacy for a while in between.  Unfortunately this has proven to be incredible difficult.

We're managing to keep things afloat but 2 (nearly 3) weeks post egg collection I'm still very uncomfortable.  I've got a relatively constant ache in my left ovary (I've spoken to my nurse and as it's more of an annoyance than a terrible pain she's not too worried).  Whilst this is easy to ignore most of the time it makes penetration quite uncomfortable.  I'm also still pretty constantly exhausted from my normal EDS issues and all the hormones trying to sort themselves out.

All in all I feel like I'm being a pretty crap wife at the moment as all I want to do when I get in bed is curl up and go to sleep.  I know that I shouldn't feel so bad considering what I'm putting my body through but that's not ALS' fault and he shouldn't be punished for it.

We've been out today for dinner and a movie and we all know where that's meant to end but I just feel nervous about it being painful and worrying that there's something not quite right.  I keep thinking I should just get it over with, which is not a healthy way to feel about intimacy with your husband.  I feel incredibly unsexy and I'm really hoping this goes away soon so we can go back to our normal relationship and I can stop feeling like I'm being a rubbish wife!

One, Two, Three!

About 15:30 this afternoon I had a call from Guy's... except I was at work, nowhere near my phone and when I returned 5 minutes later I had a missed call but no voicemail message.  I immediately rang back but it was just a recorded message that said something along the lines of thanks for calling, you can't leave a message here and if we still need to speak to you we'll ring back.  I tried to get hold of ALS, assuming they'd have rung him when I didn't answer, but he's been on a course all week so I figured he probably didn't have his phone.

Halfway through my walk home, whilst I was trying to find a different number for the embryology department at Guy's, ALS sent me a text saying he'd had a call about our embryos.  Then nothing for a very long 12 minutes!  Finally he rang me and confirmed that we have THREE embryos that are genetically suitable for transfer.

We had 5 biopsied and frozen so to still have 3 after the genetic results I am pretty ecstatic.  Obviously it's still a long road and we're not even close to being at the end yet so I'm trying not to get my hopes up too much BUT I'm allowing myself to be happy about this.

Eeeeek!

Outsider...

Everyone I've come across in IVF forums and groups has been incredibly supportive to me and I will be eternally grateful to this.  This post is not meant in any way to detract from that, it's just something I've been thinking about.

I've not really fit in anywhere on my journey and it's been very hard to get the information I've been looking for about other people's experiences.  I'm not able to conceive naturally because of my husband's genetics nor am I infertile.  I feel somewhat of a fraud asking for help and advice on fertility forums because my fertility itself is fine.  I'm going through IVF but for a very different reason to many women and I've never had the opportunity to try to conceive naturally (nor have I therefore experienced what most women going through IVF have suffered through to get to this stage).  Because I don't have fertility issues my treatment has been quite different to those going through IVF after failed conception attempts, recurrent miscarriages and all manner of horrible, traumatic events.

My quest for people who can relate to my specific journey (and I theirs) led to me stumbling across a group on Facebook for women and couples going through IVF with PGD.  Whilst PGD isn't completely specific to Huntington's disease or our situation and whilst it can apply to women who have had unexplained recurrent loss or difficulty conceiving, I have found a few people in my exact situation who I can relate to.

Of those who are testing (both fully and non-disclosure) for HD, almost all of the women I have spoken to have become pregnant following their first transfer.  This has given me an amazing sense of hope - you hear so many IVF horror stories of women never actually having children, but realistically in my case that's unlikely as my fertility tests are all normal.  However, I'm not sure how much I'm appreciating the sense of hope because I've been trying not to get my hopes up too much until we have a definitive pregnancy.

All I seem to have learned from this process is that I don't know what I want (in terms of support, being hopeful, being realistic), my hormones are completely all over the place and I'm definitely not alone in these feelings.  All in all I feel like I'm handling the situation better than I expected and definitely better than ALS expected (he of little faith).  We are now 9 days post biopsy and I've not lost my mind yet - fingers crossed we hear something soon!

Conflict Resolution

As an NHS staff member I have to do a min-course every year on "Conflict Resolution".  It's ultimately boring, uninformative and really just common sense but it's compulsory.  However, lately I feel like people could do with it.

Over the past few weeks I have found myself surrounded by conflict; an ongoing feud between 2 friends who can no longer stand to be in the same room as each other, politics causing difficulty in our powerlifting federation, our neighbours yelling very loudly at each other (or someone they appeared to know - it was dark, I couldn't tell) outside their house and work colleagues who have ended up with our offices all being moved around because they physically can't work together in a civil manner.  This is not an extensive list and I could go on, but I'm sure you get the gist.

In each situation I have kept my involvement to a little as physically possible because, quite frankly, I don't need that kind of drama and negativity in my life.  I have quietly accepted the office changes, shut my window to block out the neighbours, ignored the bitchiness in our sporting circle and comforted my friends when they were upset whilst trying to remain detached from the situation etc.

 Admittedly I did have an argument with an acquaintance who runs in the same circle as myself and ALS the other day.  He didn't think before he spoke and I called him up on it a little too harshly.  The difference is, within 10 minutes I had apologised, as had he, because we both realised it was an unnecessary argument and we could both be a bit more sensitive in the future.  In the above situations, I have no control over the situation as I'm not directly involved yet it still affects me and I find myself getting stressed and wound up about the way people are handling things.  I'm not saying I'm perfect and I'm sure there are times when other people would like to remind me of what I'm about to say.

Maybe it's because the summer is over and we're heading into rubbish weather and far less hours of daylight - something that often makes people feel low.  Maybe it's because people have personal things going on that is causing them to have a shorter fuse than normal.  Maybe it's because the economy isn't great and people are having to tighten their purse-strings and miss out on the little luxuries that make them happy.

It could be any number of reasons but I really don't seem to be able to escape conflict lately and I don't know why.  Maybe I've always been around this much conflict but suddenly, having gained a whole new perspective of what's important on my journey to conceive, I don't feel like people are really remembering what matters.  I know that sounds horribly pretentious but the fact is most of the conflicts above could have been resolved or even avoided if people had dealt with situations a little more sensitively and if others hadn't taken things so much to heart.

If you're in a situation where you have a different opinion to someone, feel strongly about something or have been upset by something someone has done and need to let them know, remember "Conflict Resolution" (and avoidance) goes a long way.

- Think about what you're saying, and its implications, before you say it.
- Consider how the other person involved might be feeling. Think how you would react if you were in their situation.
- Try not to take things too personally.  If someone doesn't agree with your idea or something you like, it doesn't mean they don't like you and it doesn't automatically make them a horrible person.
- Prepare for the fact that the other person may well have a very good point and you may have to admit you are wrong (which is not easy, but often the key to resolving conflict).
- Decide on a way to get your point across whilst keeping in mind that others may not agree with you.
- Respect other people's opinions but also remember to respect yourself.  If a person is really negatively affecting you, then removing them from your life (in a civil manner) may be the only way forward.
- Remember that the other person could be going through something you aren't aware of and (wrongly) taking it out on you.
- If you really feel someone is being unreasonable and there is no way to resolve the situation then walk away.
- Most importantly don't spend your time bitching to someone else about the person you're arguing with.  Imagine how you'd feel if they were doing the same.  Odds are it will get back to them one day and you'll end up feeling very embarrassed, hurting their feeling and ruining any change of reconciliation.

Obviously the above only goes for minor quarrels and petty arguments - it's not necessarily going to help if your significant other has slept with your sister or something equally dramatic.  I've definitely been guilty of jumping to conclusions, speaking without thinking and bitching about people in the past - none of which I'm proud of.  I feel like I've really "grown up" in the last couple of years and it's been a long time since I really argued with anybody but I'm going to try and employ this in my life as well.  Hopefully if the person on both sides of an argument is thinking about these things, they'll both manage to come to some sort of resolution that aides them and doesn't make everyone else around them uncomfortable.

There's enough war and conflict in the world without us creating more of our own, especially when it involves people we ultimately care a lot about.

Lucky lucky lucky!

Let me start by saying that I am fully aware my journey is different to those who suffer with infertility.  I am not comparing myself to them because that is a heartache all to itself and I really can't imagine how it feels.  I've read countless blogs about couples who are years into trying to conceive, feel like they are getting nowhere and still have no idea whether they will ever become parents.  I am really not trying to compare what I'm doing to that.  But sometimes, even though I know it could be worse, you still wonder "Why me?".

When you're going through IVF it's easy to feel like you are incredibly unlucky.  I often think that ALS and I are unlucky because of the gene he may carry, because this forces us to go through IVF, because it means we can't just have sex and make babies like a "normal" couples.  I then compare myself to others, less fortunate and feel guilty.  Neither of these are exactly healthy trains of thought but all things considered we are VERY lucky.  Sometimes a change of perspective makes all the difference:

Unlucky:  We never got to try and have a child naturally.  We never had the moment of wondering if we'd just conceived a baby or being intimate in the process.
Lucky:  We will never have to wonder if we have fertility problems or if we will be able to conceive naturally.  We had to jump straight into the IVF but during the process we got a full fertility workup and we are both very fertile, which is something many couples would love to be able to say.

Unlucky:  ALS may carry the gene for Huntington's disease.  Not only would this prove fatal for him but he would have a 50% chance of passing that gene onto any child we created.
Lucky:  Science has come on so much in the last few years that it is possible for us to ensure (with relative certainty) that our child will not inherit that gene.  We can do this without even having to find out if ALS has the gene - therefore keeping us hopeful that he'll never develop symptoms.  Sure, having to go through IVF is no walk in the park but it provides opportunities that in the past we would never have had.

Unlucky:  Once we do manage to have a child I will not be able to afford to be a stay-at-home mum (which has been my dream since I was a little girl) and I don't know how I will cope mentally with that.
Lucky:  I am in a job where my manager and a couple of select co-workers are aware of my situation and what ALS and I are trying to achieve.  They have been incredibly supportive and let me work around my appointments with no qualms, despite the fact I'm new to the department and have asked for a lot of lenience in my first few months.  Once I do have to work around childcare I really can't see them being anything but supportive.

Unlucky:  We have to travel to Sheffield for all of our fertility appointments and to London for any procedures.  This is inconvenient and costly.
Lucky:  Whilst travel costs are expensive we are incredibly fortunate to live in a country where our fertility treatment (3 cycles or until we have a child - whichever comes first) is NHS funded.  I know the costs of doing this privately and quite honestly, if we didn't have the funding for it I would have to very quickly resign myself to being childless.

This last point is the one that I really want to touch on because I'm currently reading a blog (www.the2weekwait.blogspot.co.uk) by a lovely lady, living in America who had to go through many fertility treatments before she eventually became a mother.  The financial strain alone is excessive, let alone when you consider that you're already emotionally drained without having to worry about money too.  She is sadly not an exception, more of a depressing reality.  I genuinely cannot express how grateful I am to have been born into a country where I have the opportunity to have PGD IVF and I don't have to pay for it for the time being.

It's not easy but there's usually a way to put a positive spin on things and even during my short journey so far I feel like I have grown as a person and seem to be doing a far better job of keeping my chin up, not worrying too much and taking each days it comes!

Support Network.

The one thing that has absolutely amazed me about the IVF process is the incredible support network of women, at various parts of their journey, that fills the internet.  I first heard about PGD by reading an incredible blog called A Survivor's Guide to Huntington's Disease, for which I can't explain how grateful I am.  Without this blog I would have no idea about the process involved but more importantly I probably wouldn't even know it was an option.  I would never have known to get started early because it would be nearly 2 years before we actually got the treatment phase.  This blog is just one of many that I've read regarding IVF and the journeys of couples becoming families and they have all been invaluable.

When I had questions about the process, what to expect, if my side effects were normal or how to get the injections just right I googled it and I came across forum after forum full of women sharing their stories, tips and support with others.

In the last few days I have joined a group on Facebook and already spoken to many amazing women.  It's a place where they can share their journey (whatever stage they may be at), get support and advice, provide support and share their experiences with others, look for a friendly chat when they've had a loss or negative test and equally share their positive tests, when they finally get what they've been waiting for.  Everyone is very mindful of one another and is aware that just because they had good news today, it doesn't mean someone else didn't have bad news.  Posts are all dealt with sensitively and I have seen nothing but inspirational women.

Most people going through IVF may not know anyone who has already been there or is currently doing the same so having people to talk to who know, to some extent, what you're going through is a brilliant feeling.

The thing that amazes me about all of these social media outlets is that there is nothing but support.  Most forums or Facebook groups you visit, about any topic, have major arguments going off everywhere.  People don't agree with other people's opinions and they just open their mouths before they've thought about what they're saying.  In the IVF community there is none of that.  You celebrate and commiserate for each other and there's no time for putting other people down or having petty arguments.  Everyone understands so there is no judgment.  Nobody makes insensitive comments because they know what you're going through - even if their story is completely different.

It really makes me want to celebrate being a woman and whist I'm sure we'd all rather be able to conceive naturally, I'm so proud to be part of such a community and these women have become an important part of my life.

Five little embryos!

The phone call I was waiting for came at around 11:30 this morning.  None of the remaining 5 embryos were suitable for biopsy and freezing, so we're left with the 5 that we had yesterday.  Dropping by half at this stage was pretty devastating but the clinic are very optimistic and keep telling me that it is a very good number so I'm trying to stay positive.  At least we know those 5 are good for transfer so any we lose after this (when we get the genetic results) is our own choice to protect our future children.

There's nothing really happening now until we have the biopsy results in 2-3 weeks so I'm going to try and put it to the back of my mind and worry as little as possible.  This therefore means that my blog will have slightly different feel for a couple of weeks.  I'll be delving more into non-IVF matters (such as giving a bit more information about my condition) and generally posting a bit more about myself as a person rather than just an IVF patient.  I'm going to try and cover various topics (IVF support networks, Ehlers-Danlos Syndrome and its many presentations, working with a "disability" etc.) and actually provide an insight into things rather than just a daily update on how my life is going.

For tonight, however, I'm going to be a little bit naughty and tuck into some Ben & Jerry's ice cream whilst I watch House!

Biopsies.

Yesterday was biopsy day and this morning we had a phone call from Guy's to let us know how many were suitable for biopsy and freezing.  To be honest, I'd forgotten we were even expecting a call.  My head has been all over the place lately and I'm really struggling mentally.  I've suffered with depression before and I'm feeling very overwhelmed lately.  I think it's mostly from the PGD process although I don't feel outwardly worried when I think about it.

The phone call came about 12:30 and the embryologist started by confirming ALS date of birth and then saying he had good news for us.  I thought, "Great, we must have about 7 or 8 embryos at least".  What followed was not what I would consider GOOD news, nor bad news.  We have 5.  They said there may be a few more suitable to biopsy tomorrow and they will let us know if there are.  As it stands we have 5 frozen blastocysts (embryos grown for a number of days) and we will know the biopsy results in a couple of weeks.

Theoretically we will lose 50% through the genetic test as 50% will have ALS' mum's DNA so that takes us down to 2.5 (as 2.5 isn't a valid amount of embryos and I'm a pessimist we'll round down to 2).

I know I should feel incredibly lucky.  We could have had none grow to a suitable size.  We could have had none suitable for freezing.  We could have had none survive the biopsy.  Yet I'm still disappointed.  I'm trying to stay hopeful for tomorrow that we may get a couple more.

Once we get to the stage of transferring a frozen embryo I'd really like to have 3 or 4.  That gives us the opportunity for it to not work first time, but also to have a sibling.  The NHS funding covers 3 cycles but only until you have a healthy child.  A further cycle would be approximately £10,000.  A further frozen embryo transfer would only be around £1,000.  Therefore, in an ideal world we would have some "spare" frozen embryos even after I get pregnant this time.  If we have to use the last embryo to get a viable pregnancy I can pretty much guarantee our child will be an only child.  If we have 1 or 2 left over at least we can try again - our child could still end up an only child but we'd be able to try.

This whole process is full of so many ifs and buts.  It's an absolute minefield and you really can't PLAN your way through it.  We probably aren't financially stable enough to have a child right now, but if we don't try now and it doesn't work the first few times we could be another 5 years down the line before I become pregnant.  Likewise, it could work first time and I could be pregnant before Christmas.  There's just no knowing.

We still haven't decided whether to try for an embryo transfer during my November cycle or whether to leave it until the new year but you'll be the first to know when we decide!

Waiting

I've mentioned a few times that patience is incredibly important when going through the PGD process and honestly, I'm pretty surprised how well I'm doing at it.

It's now 4 days since egg collection (3 days since we found out we had 10 fertilised) and tomorrow the biopsies will be done.  We'll then be informed on Sunday how many embryos are suitable for freezing and then it's another 2-3 week wait to find out how many we have to discount due to the genetics.  I've not really been thinking about it at all and I find that odd - I normally dwell on things way too much, worry way too easily and generally stress about everything.  It's odd to have gone from doing everything in my power to create healthy eggs - a good diet, giving up alcohol and caffeine, the daily injections, taking supplements, exercise - to now having absolutely no impact on what happens to them.

I think the reason I'm not being impatient and wishing the days away is because I'm not sure I want the results.  Currently we have 10 embryos which provides us with a really good chance of me becoming pregnant.  Realistically I know that we could easily lose a few that haven't grown enough and half (or more) because they have the chromosome we're trying to avoid.  I'm aware that we could end up with none.

Currently things are looking good, we have hope and I'm coping well.  I can't say that I'm feeling any particular emotion about the process, neither excitement nor concern. I'm almost numb to the whole thing at the moment, happy in my state of limbo where things are positive.

Maybe ALS is rubbing off on me.  He's always very realistic and doesn't tend to think or worry about things that are beyond his control.  He takes everything as it comes and deal with life with very little visible emotion.  I'm normally a very emotional person; if I'm excited or nervous about something I'll talk about it non-stop, if I'm upset I'll comfortably let myself cry until I feel better and if I'm annoyed about something I won't hesitate to rant about it.  This practical, realistic approach to everything is very new to me and very unexpected but I'm rolling with it and hopefully it'll make the whole process at easy to cope with as possible.

Multiple Births!

Disclaimer:  This post touches on some difficult subjects such as pregnancy loss and the risks associated with multiple births.  It may not be advisable to read if you're currently pregnant, especially with multiples, although I have tried to deal with the subject as sensitively as possible.

This evening I made a mistake.  I absolutely love One Born Every Minute and tonight I decided to watch an episode I recorded last week.  It was a special about twin and triplet births, so I thought it would be informative and have 2 or 3 times more babies to coo over - how could I go wrong?

The episode followed 4 couples, each with their own story and none without complications.  Whilst the issues were dealt with sensitively and the outcomes were mostly happy, it really did highlight the risks of multiples and made me fully appreciate why they will only transfer one embryo into me at a time.  With 2 embryos being transferred, in a young fertile woman, the risk of twins is majorly increased.  Even with a single embryo, due to the IVF, there is a slight increased risk of twins but not much more than a normal pregnancy.  It does however mean that if I do become pregnant with twins, they would be identical (from that one embryo splitting) and share a placenta.

In twin (or more) pregnancies where 2 babies share a placenta there is a risk of a condition called twin-to-twin transfusion.  This means that the babies share some of the blood vessels and one baby effectively haemorrhages into the other, leaving one considerably smaller baby.

During this episode, one of the couple's had conceived twins naturally but quite early on it was noted that one baby was a lot larger than the other and a diagnosis of twin-to-twin transfusion was made.  The couple were seen by a specialist in London and it was advised that the woman undergo a procedure to separate the babies, ideally leaving them both with a separate placenta, so that the babies could both grow normally.  They were informed that if they did not go through with the procedure there was a very high risk of losing both babies.  It showed the procedure and explained that there would be a 2 week wait for them to find out if it had worked.

2 weeks later, the couple return for a scan and only one heartbeat can be found.  The cameras were on them throughout the appointment so you really are going through the emotions with them and I'm not ashamed to say that I cried for them both.  I cannot even begin to imagine the elation of hearing the larger baby's heartbeat, only to be followed by complete despair when they were informed they had lost the smaller baby.

I've always loved the idea of having twins, especially as we will only have NHS funding for IVF until we have one healthy baby.  I thought it was the ideal way of having more than one child without having to shell out thousands of pounds for a second round of IVF.  But if I'm honest, I'm much happier only being able to transfer one embryo (and maybe having to do that a few times before we succeed) that using more than one and ending up in a situation like this.

Don't get me wrong, conceiving twins is not a bad thing by any stretch of the imagination.  There are many healthy multiple babies born every day and, likewise, even a single pregnancy is not without its risk.  But for me the thought of waiting a bit longer for a healthy baby is still the better option and IF twins occur naturally, I'll be elated (and a little nervous) just like I will with a single pregnancy.

Maybe, until this process is over I should lay off the One Born Every Minute episodes!

"Listen to your body!"

If I had a pound for every time I've been given that piece of advice during this process, I'd be pretty damn rich by now.  However, as frustrating as it can be it really is the best answer.  There's no hard and fast rule for how quickly you will recover, how your body will react to medications or what you should and shouldn't do (other than the obvious; no drinking, smoking etc).

This morning I was feeling pretty exhausted but I dragged myself to work and got on with it.  I'm not going to lie, by the time ALS picked me up from work I was ready to curl up in bed and sleep until morning.  Instead I decided to head to the gym for an upper body session - I'm not ready to try anything that will tax my abdomen/core as I'm still quite tender, but I figured training my chest and arms would be okay.

I was pretty wary but I have to say I feel so much better for it now.  Training tends to give me a mental boost and definitely increases my energy levels - as backwards as it may sound.  A few people have told me to spend a couple more days in bed or resting but I know that the longer I'm inactive, the more tired I get and the harder it will be to get back into it.  This is what it means to listen to your body.  For some people going back to exercise straight away may not work and in other circumstance, it may not have worked for me, but I knew how I felt and I knew that I'd had enough rest and it was time to get back into a routine to get my energy back.

It wasn't a particularly heavy session but I was impressed with how well I managed (without causing any pain in my ovaries/abdomen - I would have stopped immediately if I'd had any problems).  I posted a nice easy 40kg bench press for our gym's current challenge (best total squat, bench and deadlift on a pound for pound basis).  This puts me in the lead for the women as well - not bad considering I've been out of training for 3 weeks and I'm only 2 days post surgery.  I'm really wary of squatting or deadlifting so I'll be leaving that until at least the weekend and definitely won't be putting any sort of heavy weight on.

You are always the best judge of what is "too much".  You know your own body better than anyone else and if you think you're fit enough to get back to regular activities then you're probably right.  Likewise if you're experiencing problems or not recovering as you might expect, don't hesitate to speak to your care provider and do NOT worry that you're complaining or wasting their time just because they said you'd be back to normal by now - that's what they are there for.  Don't be afraid to insist someone check you over if you're concerned!

Listen to your care providers as they know what they're talking about, but remember everyone is different so pay close attention to your own body too and don't ignore your instincts!

The last few days - including egg collection.

What a busy few days! I'll try and sum it up as briefly as possible, without leaving out any of the important bits.

Sunday 4th September

We headed off to London about 18:30 on Sunday after our friend had arrived - she'd kindly kept herself on standby to come and take care of the cats at short notice once we got our date.  She's house sat for us a couple of times and she's fabulous, it's usually tidier when we get back than it was when we left which removes any stress of having to come back to a load of housework.

Our train departed at around 20:00 and we got into St Pancras just before 22:30.  My cousins had advised me to get an Uber and I can't explain how convenient this was.  They'd sent me a voucher to get £10 off the first trip as a new customer so I downloaded the app, requested a pick up and within less than 2 minutes our car was there.  30 minutes later he dropped us off at my cousin's flat and the app charges it from your bank account so there's no cash to worry about - with the discount it came to £4.50 which, at £14.50 for the actual trip, is incredibly cheap for London.  Even in Derby a 30 minute trip would cost well over £20.

We had a bit of a catch up with my cousins, whom we'd not seen since our wedding in February.  They sorted us out with directions to the hospital for the morning and then we headed off to bed.

Monday 5th September

Egg retrieval day had finally arrived!  I was surprisingly not too nervous when we left the flat at 07:00, but I was pretty damn hungry and thirsty (you have to fast from midnight the night before but I'd not actually eaten since around 9pm).  I was quite uncomfortable at this point as my eggs were reaching their maximum but mostly just bloating rather than pain.  Once again the transport in London exceeded expectations and after a short train journey we were at London Bridge Station, just around the corner from Guy's Hospital.  As we'd been worried about being late we left really early and actually ended up in the waiting room at around 07:30.  We had to wait until 08:00 for the reception to open, we let them know who we were and what our appointment was for and then headed back to the waiting room.

A nurse came and collected us at 08:20, took us to the large recovery room and sectioned us off behind a curtain.  She checked all our details, gave me a wristband and provided me with a gown, hairnet and slippers to get into (a fetching outfit if I ever saw one).  I was asked to empty my bladder and get changed whilst she went off to get everything ready.  Shortly after I was changed the anaesthetist came in to have a chat with me about the sedation and again, checked my details.  I have to say the anaesthetist didn't have the greatest bedside manner and I was probably more nervous after having spoken to her.  Another 10 minutes passed, making it about 08:50 and the embryologists came in to check my details (again) and took me through to theatre.

Once I was there I was asked to lie down and shuffle my bum right to the bottom of the bed, whilst my legs were fastened in stirrups and the embryologist sat himself between my legs - to be honest there was no embarrassment; everyone was very professional and I was too nervous to care by this point.  When I was all set up the anaesthetist's assistant came in, hooked me up to the blood pressure and heart monitors and busied herself looking for a vein to put the IV in.  I have to say she was a lifesaver.  She was very professional but friendly with it and put me a lot more at ease - or so I thought.  The anaesthetist got the IV in my hand and said that they'd start cleaning me up for the procedure whilst I was gently sedated and then once they were ready to start she finish the sedation and I'd be asleep.  She then stopped and told me that she couldn't do anything until I'd calmed down because my heart rate was over 140bpm!!  Fortunately a few deep breaths later and I was fine to continue, I remember asking if it was normal for my whole arm to really hurt as the sedation went in which she said was perfectly fine and then I told them the ceiling tiles were moving...

The next thing I knew I was waking up, tucked up in bed just as I was being wheeled back into the recovery room.  I got there just before ALS who'd been providing his specimen.  I remember telling the nurse I was surprised how awake I felt so she left me lying down for a few minutes and went to get me some water and a biscuit.  ALS told me it was about 09:20 at this point and he nipped out to Sainsbury's to fetch me some Lucozade and get himself a sandwich.  The nurse returned with water and biscuits which went down pretty nicely and she gave me a heat pad to prevent/alleviate any abdominal discomfort.  A few minutes later the embryologist came to let us know that from my 14 follicles we'd had 13 eggs - a really good number!

After that ALS returned and I shared the good news.  Things went pretty quickly from there, my observations were checked a couple of times and my IV fluids were taken away as I was drinking anyway.  They asked me to empty my bladder which I did with no problems and once I was dressed they removed the cannula and off we went.  They'd said I'd be in recovery for about 2 hours but I bounced back pretty quickly and we headed off the hospital premises at about 10:20, just an hour after I'd woken up.  In hindsight I'm glad we did because I started to experience quite a lot more pain after the painkillers had worn off.

I slept on and off for most of the afternoon but did manage to make it out in the evening, dosed up on paracetamol, for a meal with ALS and my cousins.  By the time we got back to the flat I was in quite a lot of pain; a mixture of period type cramps and feeling like I'd been repeatedly punched in the ovaries.  Urinating was horribly painful and I seemed to be going every 20 minutes or so (they tell you to drink 3 litres of water every day for the first few days after collection).  I do drink a lot normally anyway so getting the water down was fine but with my ovaries still being swollen there wasn't much room for liquid to sit in my bladder.

Tuesday 6th September

This brings us to today!  I felt really rough this morning and urinating was again horribly painful but we had to get up and get our train home.  Having only had about 3 hours sleep I nodded on and off during the train journey and when we got home I headed straight to bed for a good solid 3 hour nap.  When I woke up I did feel considerably better and the pain was only there if I stretched or bent up and down.  I had some food and then we went for a little walk around our local park - which surprisingly took it out of me quite a lot and after about 45 minutes I was ready to head home.  I've just had a nice bath and I've got a hot water bottle on my abdomen at the moment.

We had a phone call this morning to confirm that 10 of our 13 eggs had fertilised, which I'm happy with.  They'll do the biopsies on Saturday and on Sunday we'll know how many have been frozen.  2-3 weeks from then we'll find out which ones have ALS' mum's chromosome and can't be used.  In the meantime I just have to wait for my period to start and go back on my contraceptive pills when it does.

I'm a little frustrated to have just been informed that the risk of a twisted ovary can continue for up to 4 weeks post egg collection as by the end of this week I was hoping to get back into training ready for a big competition in October.  I've mostly resigned myself to the fact that this won't be possible and I'll just have to go in and do whatever I can but it would have been better if I'd been told before we started the process that I'd have to keep the exercise to a gentle level after egg collection.

The best advice I've had is to just listen to my body so that's what I intend to do!

I'm sure I've left various things out so please don't hesitate to leave a comment if you have any questions that I might be able to answer!

A Sensitive Subject!

I've been toying with the idea of this post for a while and thought it might be too much, but it's an important issue with nowhere near enough information out there so I'm going to go ahead and post it anyway.

Generally, when you think of conception you think of sex.  It's the natural way to make babies and whilst it's incredibly intimate anyway, it can be far more intimate when you're trying to create a new life.  For anyone suffering with infertility, it can become more stressful than pleasurable; it's not so intimate when you're trying to time sex around ovulation, use the most "conception friendly" positions and desperately waiting for that positive test.

Due to us having no infertility problems, I never considered how much the IVF would affect our sex life.  Obviously I knew that coming off my pills would mean we had to turn to condoms for contraception, something that we had already experienced whilst having our fertility tests in the first place.  It's a bit more expensive and kind of ruins a moment, but it's a small price to pay to remain intimate.

Unfortunately, what neither of us took into consideration was that IVF is incredibly un-sexy.  Since a few days into the stimulation cycle I've been incredibly bloated, which makes me less than attractive.  By day 7 I noticed when I had my scan that it was quite uncomfortable just getting the ultrasound probe inserted and everything felt incredibly tight down there.  Due to the ovaries expanding with all the follicles everything has been pushed down somewhat (like it would be during a period but to a more significant extent).  Whilst enjoying a nice relaxing bath on day 10 I tried inserting a finger into myself, just to see what was going on down there and just that was very uncomfortable.  I won't even go into the discharge/cervical mucous that's another common side effect.

We've managed to remain intimate with making sure ALS ejaculates regularly to keep the sperm healthy but there's not been anything in the way of orgasms for me.  ALS has been more than happy to try anything for me but I'm nervous of it affecting the quality of the eggs (we never had chance to discuss it with our nurse) and everything is very tender, to the point where wiping after urinating is painful.  As of 3 days before the retrieval his pleasure had to stop as well so that his sperm is at its best quality (and a good volume) ready for the collection.

My thoughts on the matter are a little jumbled at the moment because over the last 2 days I've experienced horrendous fatigue - another side effect, made worse by my EDS - but what I'm trying to say is be prepared.  It's not a time where intimacy is easy, or even possible sometimes, but spend time together doing things you enjoy, make sure there are plenty of cuddles and do what you can to keep your relationship strong.  Communication is key as it's a stressful time for you physically but your husband is going through the emotional side of things just as much as you are - he probably feels guilty that he's can't take more of the physical burden as well.

Just remember, it will all be worth it one day.

Trigger Happy!

It's done!

I'm not going to lie, it was the most stressful few minutes of my life.  Even though we asked the nurse before we left Sheffield on Wednesday and she said it was 0.5ml, naturally we doubted ourselves.  All of the previous injections have been in pre-filled pens (like Gonal F) or you draw it into the syringe yourself but use the full dose (like Cetrotide).  It's been so long since we had the tutorial that I was really nervous about doing it wrong.

Fortunately, ALS kept a level head as always, got 0.5ml in the syringe and injected me as normal.  It must have been a thicker needle as it was really tough to pierce the skin and quite painful - nothing unbearable though.  The other reason for this could be because we had to use the same needle to draw the medicine up as we did to inject it, therefore piercing the rubber on the bottle may have blunted the needle somewhat.

Either way, it's not hugely painful in the grand scheme of things and that is the LAST injection (at least until we start getting ready for transfer).

I've been absolutely drained today so I'm looking forward to an early night and not having to get up at 6am to do the Cetrotide.  Tomorrow will be all about relaxing before heading to London as our train doesn't leave until 8pm!

My next post will be after egg retrieval, probably when we get home on Tuesday.

Wish us luck.

Cetrotide Top Tip!

I've found that my Cetrotide injections are either really painful or I pretty much don't feel them - with no middle ground.  The other day I read something about keeping the bevel of the needle pointing upwards so the sharpest bit goes in first.  We made sure we did that this morning and lo and behold, I didn't even notice it go it!









As you can see from the image above, if you're putting it in with that pointing down it's going to be trying to force the blunter bit through first.

Just thought I'd share that with you in case you're having the same problem - it's always something worth trying.

Other people have mentioned using ice packs to numb the area beforehand but I haven't found this to be necessary so I haven't tried it.  I did forget to take my injection out of the fridge earlier than I needed to do it this morning so I did it cold and again, it didn't add to my pain.  That's not to say that it won't make a difference for others though.

Any tips you'd like to share?  Maybe you've found something that works with certain meds but not others, or something unusual?

Patience and Preparation!

The biggest thing I can tell anyone who is wanting embark on an IVF journey is patience is a virtue.  It can be very frustrating, especially not being able to plan things and not knowing.  Uncertainty is scary.  I'm a reasonably patient person anyway and I'm finding it hard work but I imagine if I weren't, this would be very much unbearable.  I'm somewhat torn at the moment between wanted to stay busy to keep myself distracted and being way too drained from the medications to do anything!  I'm well aware that once I get to the 2 week wait (the 2 weeks between having an embryo transferred and finding out if you're pregnant) it will be the longest 2 weeks ever so practicing distraction techniques and patience now is not a bad idea.

The other important thing, especially if you're wanting PGD IVF for a genetic condition, is to get started early.  From our first appointment with the GP to starting our first IVF cycle was 18 months.  That was with everything going pretty smoothly as well!  I'd read on another blog (www.survivinghuntingtons.blogspot.co.uk) a few years ago that you should get the process in motion before you're ready because if you wait until you're ready to have kids, you're then looking at another couple of years after that before you even have a chance of being pregnant.  She completely hit the nail on the head.  I've always known I wanted children by my mid 20s and we had our first appointment when I was 22.  I'm now 24 so if this cycle works I'll give birth sometime when I'm 25.  If not, I've still got a few years to play with.  If we'd waited until now to see our GP I could have been in my 30s long before I had a child.

With having a child naturally there's always the risk that you may have fertility issues and take a while to get pregnant, but at the same time if you start early you could get caught straight away.  With PGD you know that it will be a long process from the outset.  These are the steps we've been through from the beginning - often with a couple of months in between:

• Appointment with the GP to ask for a referral for PGD IVF.
• Appointment at our local hospital with a Clinical Geneticist to discuss the genetic side of things and our options for IVF.
• Appointment in Sheffield (satellite centre for Guy's Hospital in London) with the Genetics Team to discuss in more detail the process involved from a genetic viewpoint.  We also had bloods done at this stage (myself, ALS and his father) to enable them to create the genetic test for embryo biopsy.
• Appointment with the Fertility Unit in Sheffield to discuss the fertility side of things and arrange preliminary fertility tests.  This also involved an internal scan.
• ALS had to provide a sperm sample and I had to have bloods done on day 2 and 21 of my menstrual cycle.
• Further appointment with Fertility Unit in Sheffield to go through the test results - fortunately everything was OK.
• Multidisciplinary meeting with Genetic Consultant, Fertility Consultant and Fertility Nurse (who was our main point of contact from this point going forwards).
• Appointment with Fertility Nurse to discuss treatment cycle and to be shown how to do the injections ourselves.  We were given the date to stop my pills and to come back to the clinic to start the cycle (19th August).

And that brings us up to date...