Life with the Big E

OK, so I have been trying to write this post for months but have struggled to find the words.  It's going to be a long one so you may want to make a cup of tea, and I warn you that this post is going to be extremely honest and may be graphic at times, but I will try to keep it as modest as possible.

Being Diagnosed
I want to share with you my experience with an illness that has affected my life since I was 18 - well actually I was diagnosed at 18 but the symptoms started when I was 16.  During these years, I was in the process of completing my A levels and found that I was becoming increasingly tired at the end of the day.  This was accompanied by periods that were becoming increasingly more painful, heavier and lasting for longer.  My sister suggested that I go to my GP and ask them to check for endometriosis.  She had been diagnosed a few years earlier.  So I booked an appointment and shared my symptoms with the GP - I asked if it could be endometriosis as my sister had it.  The GP said that he would refer me to the hospital for further tests but pointed out that endometriosis is not hereditary so it may not be endometriosis at all!  (For those of you who know about this illness, you may already be spotting some of the misinformation I was given over the years but I want to tell the whole story as it happened!).  I was prescribed some tablets to reduce the heaviness of the periods and tackle the pain as by this stage, normal painkillers were having no effect!

A few months later, I attended a hospital appointment and was informed that the only way that I could be diagnosed with endometriosis would be through keyhole surgery so I was booked in to have the operation a few weeks into my first term at university.

Let me pause here to explain what endometriosis is.

"Endometriosis is a gynaecological condition where tissue similar to the lining of the womb, grows in other areas of the body, most commonly in the pelvic region. This tissue responds to hormones in the same way as the lining of the womb but with no outlet it can cause inflammation, scarring and adhesions, leading to severe pain and many other symptoms."  

(Taken from the Endometriosis UK website)

This is a very basic explanation but I will explain how it affects my life in more detail later.  In October of my first year at uni, the doctors operated and confirmed that I had endometriosis.  They used lasers to burn away the patches they could see and then prescribed a six month course of Zoladex.

Zoladex Treatment

Zoladex is a monthly injection that deposits a pellet in the fleshy part of your tummy.  The pellet slowly releases chemicals that puts your body into a pseudo menopause.  Yes - at 18, I experienced six months of hot flushes, night sweats, insomnia and excessive tiredness.  It was brutal but so long ago that I don't really remember it clearly.  I do remember that excessive tiredness and insomnia are not a good mix at all!  During this time, I asked the GP if endometriosis could affect my fertility but I was told that I was only 18 and shouldn't worry about such things! The course ended - I became a normal teenager with normal hormones and my periods became more manageable.  I was healed!  But I was warned that the endometriosis would grow back.

Not Again!

Fast forward about 12 years and I had just married my wonderful husband.  My periods had started to become a little more painful now and I was starting to experience bleeding between periods.  I went to see my GP who said that it was likely that the endometriosis had returned.  I had read that getting pregnant could help the symptoms, as during pregnancy your body is not producing the hormones that encourage the growth of the endometriosis patches.  DH and I wanted to have children and decided it was time to start trying.  We tried for one year with no luck and as advised sought medical help.  You know the story from here as it led to the creation of this blog, but I do want to take a moment to explain exactly how endometriosis has affected my life aside from the devastating blow of infertility!

The Pain

This is probably the most obvious of the symptoms.  The period pains are severe and crippling but what many people don't realise is that with time, the pain is not only during the period but becomes continuous.  I have recently completed a second set of Zoladex injections but prior to the treatment I was experiencing severe period pains for 3 weeks out of my 4 week cycle.  The level of pain is difficult to describe but it radiates down my legs and through to my back.  I can feel my uterus cramping and it is so painful that I often feel faint and nauseated.  The worst pain is the stabbing pains which can shoot through my uterus or in the rectum - it is literally like someone is stabbing you with a knife! 

The Blood Loss (*Warning - TMI, graphic alert!)

It was initially difficult to tell if my periods were too heavy as it's not easy to determine what is "normal blood loss" but it was when I started to lose what was my daily amount of blood in three hours that I started to worry.  The blood loss climaxed in "flooding".  I would feel a severe cramp and then have a few seconds to get to the bathroom before a rush of blood.  Whatever protection I had on would not be enough to contain it and I would often have to change my clothes and mop up blood from the floor.  Not great when you're trying to get through a day at work (especially when I have a cramp in the middle of a lesson!).  This rate of blood loss obviously leads to extreme tiredness and anaemia.

The Tiredness

I've already explained that the pain and blood loss can lead to exhaustion but what I was not aware of, until recently, was that endometriosis can lead to Chronic Fatigue Syndrome.   Once again, finding the words to explain is difficult but when I've tried to explain to DH, I use this description.  It feels like I haven't slept in days and that I have done a strenous workout the day before so my muscles are aching, but all I've done is get out of bed after a full 8 hour sleep, showered, got ready for work and completed the ten minute drive to work.  By the time, I get to the door, I am so tired that I just want to cry.  On some days, I struggle to get out of bed because my limbs are like dead weights.  The most annoying thing is that this tiredness/exhaustion can hit at any time - even when I'm not on my period!  I only found out about it this year that chronic fatigue is a symptom of endometriosis through research.  My GP kept sending me for blood tests to check for viruses, and even suggested that my tiredness was due to depression!

The Awkwardness

OK, so what do I mean by awkardness?  It is really hard to get people to understand that it's more than a bad period.  Most men just don't get it and many women think you're just making a fuss!  After all, we all have periods, right?  Many sufferers feel very emotional when talking about this illness because it can really get to the point where it takes over your life and you struggle to function normally.  I know of sufferers who have ended up on morphine for the pain and are trying to battle through the exhaustion to hold down their job!  At the end of it all, it just feels ridiculous to say that you can't go to work because you're on your period but this can be a reality for endometriosis sufferers.  Most of us push through and go but some sufferers just simply can't!

So why this post?

I have repeatedly stated that this blog is a place where I will be honest and hopefully help to inform.

Endometriosis is often misdiagnosed and many women suffer for years before it's picked up!  As someone who has suffered from this illness since the age of 18, I have learnt so many new things about this illness in the last year that would have helped me understand what my body is going through.  I've learnt that my tiredness is not laziness, but a sign that my body is fighting the inflammation caused by the internal bleeding!  I feel that it's only right to try and raise awareness of this illness.  There are 2 million sufferers in the UK alone and those are just the ones who have been diagnosed!

I hope you have found this post helpful.  If you have any more questions, please write them in the comments below and I will endeavour to answer each one.  If you want more information, pop over to Endometriosis UK and have a read!

Don't forget to subscribe!

Cece

xxx

He will perfect ALL that concerns me (Psalm138:8)

Hello everyone!

Today DH and I made a major purchase.  As we sat down to sign the paperwork, I wondered "Am I choosing this object over our baby?"  What we bought is actually a genuine need for our family and a step towards preparing for the children we hope to have.  And yet, the commitment of finances seemed so overwhelming!  Each purchase (no matter how sensible) seems to be money taken away from our IVF project.  As we left the store, I thought about our purchase and how it would support us in our goal of being parents and it's then that I realised that I would be content to become a parent via any route (including adoption).

Adoption is something that DH and I have discussed in detail and are committed to doing regardless of whether we give birth to natural children or not.  It may have been due to some recent conversations I've had with mothers who have adopted and listened to their sense of contentment and deep love for their children.  But today I had to ask myself the question, "Would you be content with adopted children?"  and was surprised to hear my answer was "yes".  So what does this mean?  To be honest, I'm not sure.  Am I saying that I no longer want to pursue the IVF route?  No, but I am saying that if it isn't successful that I wouldn't be devastated if we were only blessed with children via adoption.

Now I can hear some of you shouting "Where's your faith?  What do you mean if it doesn't happen? Don't you know that God can do it?"  Of course, I know that He can do anything - He's God!!!  But I am aware that I don't know HOW He is going to make me the mummy I want to be.

Ten years ago, God used someone to tell that I would face a battle in my womb but that God would raise up on that day and that I would know that He is my Lord, my God.  This is the word that keeps me going in the dark times but I am so aware that we prophesy in part and know in part.  This word assures me that I will be a mummy but how it will come about, I don't know!

I guess all I'm saying is that I'm preparing to receive whatever God has for me in whatever format He chooses.

So why have I chosen the title for this post?  This scripture has carried me through my long distance courtship with my husband and the stress of waiting for a visa for us so that we could be together in the same country.  It reminds me that God is working it all out for me.  So as I sit here typing this blog wondering where the money will come from for IVF, wondering if IVF is how God will do, wondering if my thoughts are in line with God's thoughts on this matter or not - one thing that I can know in the midst of all these questions is that He WILL perfect ALL that concerns me!

Now I don't know how many of you are out there reading this, but I would really appreciate you commenting on my blog and sharing your views on what I have been sharing.  It is my desire that this blog encourages those walking on the same path as me and enlighten those who are cheering us along.

Have a blessed day!
Cece

Visit to the Clinic

Today DH and I went to a fertility clinic to attend an information evening. As I sat in the waiting room along with all the other couples I thought about the issue of faith.  There were about nine couples waiting there to hear all about the IVF process and why this particular clinic should be chosen and I realised that based on statistics only 3 of the couples would fall pregnant via IVF.  Not great odds really!  It was then that I realised even more so that the IVF process itself requires faith.  When first faced with the decision regarding IVF, I wondered whether I was showing a lack of faith by pursuing the IVF route instead of "trusting that God will do it".   Please don't misunderstand what I am saying!  I firmly believe that God is able to do it in spite of what the doctors have said BUT it requires faith to go down the IVF route too.  The doctors can do their best but even they admit that a large part of the process is waiting to see what will be.

So we went in and heard what the doctor had to say - she was honest (brutal at times) and made it clear that there was only so much that they can do and for some it would be down to "luck".  It's a scary prospect to pay all of that money, disrupt your hormonal cycle, run the risk of serious illness and possibly still leave with nothing!  Sometimes it's hard to understand why God has allowed this to happen for us but I know that whatever we go through that He is with us.

On a positive note, I really liked this clinic.  It felt right!   I can't explain it fully but I am realising that when you are choosing a clinic for this process, the way you feel about the clinic can have a huge effect.  I want to go to a clinic where I am confident that they are doing their best for me, understand how challenging the IVF process can be for us and provide the best possible facilities.

We visited another clinic a few months ago and the experience was very different.  The embryologist was amazing - his enthusiasm for his work was touching and I felt like I could trust him with "my babies"!  But the consultant was a different matter, she spoke about the IVF process with passion but when it came to basic customer service she was terrible.  It felt like a hard sell and a quick rush to get us to book an appointment.  I just couldn't trust that her recommendations would be what's best for me rather than what's best for her bank account!  I may be wrong but this is so much money and I believe that you need to feel at peace with the person who is going to carry out this procedure.  I wondered how she could get away with being like this but then I realised that in this industry you are dealing with people who are on the verge of desperation (if not already there) and will take any treatment.

So what's the next step?  We have to set aside money for the first consultation, get our medical notes from the hospital and I need to push harder on the weight loss front!

Looking forward to hearing your comments.
Cece

Getting back on board

Well I started to write this blog and then stopped.  In some ways it was too painful to write what I've been feeling but I know that God can use my experiences to help others so here we go again!  Let me start with some background information.
I have been married to my wonderful husband since 2007 and in April 2008 we decided it was time to start trying for a baby.  Initially not much happened and it wasn't until we had been trying for a whole year that I really started to worry - this April will make it 3 years of trying with no success and it has increasingly been difficult.  I have watched my two best friends give birth to their wonderful boys and shed tears of both joy and sorrow.  I have been prodded and probed by doctors, and questioned by well-meaning family and friends.  In October 2010, I was told that I would not be able to conceive naturally due to suffering from endometriosis since the age of 18.  I can hear some of you saying that I should have seen it coming - but I guess I was hoping that it wouldn't be a problem!  The news crushed me and I cried out to God, "WHY?!"  I still ask Him that question sometimes when it gets hard and although He may not have answered me yet, I rest assured that He is still in control.  Now I face the challenge of considering IVF and all of the issues surrounding that journey.  In a later blog, I'll explain the struggle I have over this decision, but for now I'm focussing on losing weight in case we decide to go ahead with it.  I'm doing well too - lost half a stone in the last month!
Well that's all from me today - in the next blog, I'll explore the challenges of maintaining faith and making decisions which some interpret as a lack of faith.