IVF Journey: 10w4d pregnant

This is my IVF diary. My husband and I have been trying to have a baby for four years now, and have a diagnosis of 'unexplained infertility'. We have finally reached the top of the waiting list for IVF - a form of assisted conception. I'm blogging about what happens as it happens, as a kind of therapy for me and as an awareness raising exercise of what IVF is all about.

Set my alarm for 8.30am to phone the doctor for an emergency appointment, and when I got through at 8.35am they had a choice of two left. So, headed on down there for 10.20am. I saw the same GP that sent me to the obstetric triage, which was good. She was sensible, professional and sympathetic. She prescribed me the next tier anti nausea drug, which is prochlorperazine.

The more my pregnancy nausea improves, the more I get my mental faculties back, and yet I still feel terrible and unable to go about my daily activities, the more terrifying this condition feels. I realise how ill I must have been. And yet despite being so much better:

- I’ve not cooked food, done anything about the house, done any exercise, or worn makeup in two months.
- I swam three times a week for the last five years. I’ve barely left my bed or the sofa in ten weeks.
- I have absolutely no interest in things that I usually find pleasurable. Eating, chocolate, meeting friends, Christmas, New Year, having a chat, leaving the house.
- I’ve not bought any Christmas presents.
- I have cancelled coffee with friends, lunch with friends, visits from my Mum and a long anticipated weekend away. So far. I continue to cancel things. And not plan any future things.
- I can only work up the energy to wash every few days. If I have a shower and get dressed I have to rest for half an hour.
- I can do one activity a day, following which I am super nauseous and wiped out. At the weekend I was driven to the cinema, watched a film, then was driven home. Having done this I was then too sick to put up the Christmas decorations.
- My ability to work is occasional and unpredictable. Anything I can do is done from bed and part time. I certainly could not go out to an office and work.
- I’ve lost about 2kg of weight.

I have two friends also currently pregnant in their first trimester. They also feel sick and crappy, but they are going to work, planning for Christmas, going to Christmas parties, looking after their children. I cannot do these things. I would like to. But I am not physically able.

I’ve still not been sick once despite having had hundreds of hours of severe nausea. I don’t know why. Don’t get me wrong I know I’m lucky I’m not being sick. But. My symptoms are consistent with the severe and medically significant Hyperemesis Gravidarum (Early onset, number of weeks suffered for, elapsed hours of nausea, plus “with ordinary nausea and vomiting of pregnancy (NVP), the sickness does not interfere with your ability to eat and drink enough, you should not be losing weight and you should be able to continue to care for yourself and your family although you may not be feeling too great. With HG, sufferers often need help caring for themselves, never mind look after their family. The illness can be completely debilitating for weeks or even months.”) Except that I’ve not been sick once so I don’t have this. All I can say is I historically have had a strong stomach and this ‘morning sickness’ condition I have now is not gastric. Typically my stomach only kicks anything out up-the-way if it really doesn’t want it there, and in the last ten years I can recall being sick perhaps twice – once from too much alcohol and once from food poisoning. Currently I can eat any food, spicy or whatever. My stomach is not irritated. Plus. Little known fact about me – I don’t burp. Ever. My system is pretty much one way. I suspect other people more prone to vomming or gas would have what I have and be spewing day and night. As I say I know I’m lucky, but it makes it hard for me to communicate the severity of my experience.

Anyhoo, despite this, from knowing a lot of other ladies who have been pregnant and from reading medical journals I know my experience of pregnancy nausea is extreme and unusual. And I know how the system works, I don’t expect every healthcare professional to have the answers when things are out of the ordinary. But of the four GPs, two midwives and a hospital doctor that I’ve seen only two individuals have taken me seriously. I know what the problem is, and the GP today alluded to it. Nausea in pregnancy is a spectrum, the system sees many many people with it, and people tend to exaggerate, malinger and chase sick notes.

I have accurately represented my symptoms to numerous healthcare professionals. Most of them have heard what they want to hear, or what they expect to hear rather than what I have actually said. Consequently I have not been treated according to best practice for the severity of my symptoms relating to NVP, drug protocols or my wellbeing.

And because I am not being sick there is no obvious place for me to seek treatment. I don’t fit in anywhere.

I have had to push so hard to get anyone to listen to me let alone give me advice or medication, and I am constantly being fobbed off. I am certain the medical professionals I have seen think I am exaggerating or malingering. I am left feeling ill, depressed, like a ‘difficult’ patient, a burden on the system. I am worn down by the negative reaction I am receiving.

I cannot even begin to describe how angry and frustrated I am, and how let down I feel by NHS Lothian.

No, more angry and frustrated than that.

I CANNOT EVEN BEGIN TO DESCRIBE HOW ANGRY AND FRUSTRATED I AM, AND HOW LET DOWN I FEEL BY NHS LOTHIAN.

In my line of work I routinely inform and influence public and third sector policy and practice in Scotland and the UK. I provide evidence, I sit on committees, I make recommendations to improve services.

I know things can change, I know things should change, and I know things don’t change because people sit back and accept poor or mediocre care. I deserve better, and so do all of the poor sods after me who find themselves in the same boat.

I’m going to be doing something about this at some point…

…when I can work up the energy to find out how.