Life with the Big E - another woman's story

Hi guys,

I know that I haven't written a post about the prayer challenge and how it has been going but I have just been bogged down with lots of things at the moment.  However, you can rest assured that I am pursuing the challenge wholeheartedly and will be writing about it soon!

In the meantime, I have a real treat for you!  My first ever guest post!  Yes ladies!  We have a guest writer today and it's my sister Dee.  After reading my post a while back about life with endometriosis, Dee wanted to share her story - so here it is!  
 

Most people believe that endometriosis is an illness which affects you once a month, by that they mean a painful period lasting between 5-7 days, then life returns to normal.

I have had endometriosis since I was thirteen years old but wasn’t diagnosed for another 6 years.   I have now endured the disease for the past thirty two years  in spite of this lengthy time period, until recently I was fairly ignorant about my own disease.

Endo- me what?? 

Endometriosis was classified as an auto –immune disorder back in 2008.  Experience of endometriosis are as individual as the 175 million women (yes I did say million) who suffer with this illness. It is caused by endometrium (the lining of the womb) cells growing where it shouldn’t. These errant cells also respond to the same hormonal instructions given to the lining of the womb.  As you can imagine this causes internal chaos in the form of bleeding, cyst development, inflammation and scarring. The organs which are affected become stuck together as a result and this can cause a wide range of symptoms, pain being the one that most women experience.

Size doesn’t matter

Most women know it's there because the result of the disease is pain. However the amount of pain suffered is not always related to the amount of disease present. Between 40-50% of us suffer from infertility again the amount of disease doesn’t always reduce the risk of infertility.

How many ways can you say "ouch"?    

As I said the main symptom is pain. I have chronic pain in the pelvic and vaginal area, painful menstruation, pain when my bladder is full and pain when I empty.  The same goes for my rectum.  In addition I have referred pain in my lower back, down the front of my thighs, my hips and knees. Pain when I manage to have sex and for at least two days afterwards. At the moment the pain is ever present regardless of my period.

Who cares what causes it?

That was my attitude when I was first diagnosed, but yes it does matter especially when looking for a cure and understanding which treatments/lifestyle changes might be the most helpful.  There are a number of theories the most common of which is that there is a back flow of blood through the fallopian tubes to pelvic organs.  But, to be honest we don’t really know why it occurs.

Ok, so make it go away!

I am not going to delve into the pros and cons of the current treatments, but to give you a flavour of the treatments that I have had. Where to start?! Well, the main one has been an injection ( given in my abdomen yuk!) called Zoladex.  A few years ago I underwent this treatment for a total of 6 months.  

Back then what Zoldex gaveth with one hand it tookith away with the other. 

It stopped my periods and the pain . The side effects were awful, hot flushes and flashes ( yes there is a difference!), dry skin,  This time however the Zoladex gave and gave but did not take away. I continued to bleed on occasions, the pain gave a sideways glance at the Zoladex, shrugged it’s broad shoulders and declared, "As you were!".  The rest of my treatments have been surgical and tablets liquids, patches to treat my main issue – pain!

What on earth is happening to me?

One day in November I awoke with severe abdominal, right kidney and lower back pain.  I couldn’t move the pain radiated down my thighs when I tried to walk I had to limp dragging my right leg along because I couldn’t put any weight on it.  I had never experienced anything like it before. Later that morning I attended the urgent appointment I booked the hour before.  At my GP surgery, he examined me and told me that he thought it was endometriosis.  Quite frankly I didn’t believe him.  I wasn’t having a period, no vaginal blood loss in fact I was only on day 10 of my cycle.  How could this be?!   Given the extreme difficulty I was having with urinating I thought this must be a kidney infection, after all I had had some flank discomfort in the preceeding days, I had been busy at work and delayed emptying my bladder for hours.  I was sure I was right.

The GP referred me to the local hospital for pain relief and a second opinion from the gynae team.  I was seen in casualty and admitted for pain relief.  After having endometriosis for 30 years this was my first hospital admission for pain.  After  5 days I was discharged with enough pain killers to fell a thorough bred!  Tramadol and Cocodamol for break through pain. Buscopan was thrown in as a just in case it could help with related gastrointestinal symptoms.  Oh and stemetil for the incessant nausea.

Two months after my hospital admission I am sitting in another hospital awaiting my 4^th laparoscopy.  This one was specialist centre for endometriosis, the doctor is explaining what they are going to attempt.  I am acting cool and mature but inside I want to kiss his feet and promise to do his ironing for life if he would only make my pain go away.  As you can see at this point I can’t even be inventive about the wonderful things I can promise to do! But if you knew me you would know that that’s a big deal.

I come around from the anaesthetic  to be told what I guess deep down I had already suspected.  “You have stage IV endometriosis” the doctor said.  He went on to say that my bowel is attached to my uterus by a sizeable lump of endometriosis which they were unable to remove as that would have meant taking away too much of my bowel. Further surgery would be necessary after 6 months treatment with my dear friend Mr Zoladex to try and shrink the lump and reduce the inflammation.

Fast forward to 8 months later the pain still ever present.  Increasing in intensity I was started in Oromorph (morphine) four times a day.  What wasn’t funny 10 months ago is now downright hysteria provoking !  I am unable to discern what emotional turmoil is being caused by the Zoladex and what is caused by the fact that every morning I open my eyes to the now familiar abdominal and rectal thud.  "Good morning, Dee!" it seems to dance, "Welcome to another pain filled, doped up day".

Smile

Putting a brave face on  isn’t even an option any more.  There isn’t any energy left to do that, my focus is on moving painfully through the day.  Activities which I previously did without a second thought now demand my complete attention. It's 7 steps from my bed to the en suite bathroom I know this because I’ve counted them, because on a regular basis I steel myself to make the walk.  Making the daily determination whether I will have the strength to stand in the shower once I have climbed in or do I need to sit in the bath as this is not going to be possible.  On the list of decisions to make is what piece of clothing can I wear that is going to accommodate my every swelling and receding abdomen.

You look so well!

 

Endometriosis is on the inside not the outside, there are no associated rashes, skin discolorations etc to see.  The damage is all inside, yes when I have the energy I put on some make up.  I do it to try and feel normal, it’s in an effort to hold onto some, any, piece of normality.  To say that endometriosis has stolen my life is not overly dramatic.  The pain can be so great that I cannot think to string together a cohesive sentence. The pain killer mess with my short term memory – the kids are sick of having goldfish conversations with their mom!  That is when I can stay awake long enough to have a conversation

I can’t sit as the endometriosis in my rectum hurts, lying on my back evokes the same pain. My hips ache and are sore to touch so that’s out too.  Perversely standing takes the pressure of my rectum but this isn’ t for long as gravity pushes down mercilessly on my pelvic organs and the chronic fatigue means my legs won’t hold me for long.

At this stage work is impossible, I require support in the form of a person or a crutch to walk even a few steps. 

The next person that tells me to have positive thoughts I will scream at.  “that takes energy that I don’t have right now!”

Pain is a verb

We all know that pain is subjective. We all experience it differently.  As I said earlier many people think that endometriosis means painful periods.  My pain is a constant companion.  Describing the pain is where it gets tricky, getting across to friends, family, your boss, my goodness even health professionals can be quite hard.  Finding the words to describe what I am feeling when the pain is at is worse is complex.  For me my pain is physical and psychological, but lets deal with the physical sensations first.  Where to start?  Well – the constant sensation is a deep, dull, aching pain which feels hot. It is also joined by its cousin the sharp stabbing tearing sensation that just about takes my breath away.  The doctors ask me what causes it what makes it better.  Nothing is usually the answer.  I can be lying in bed or talking with friends and the sharp pain can arrive unannounced and certainly unwelcomed.  Bringing with it intense nausea and sometimes vomiting.  Yes there are some activities that can guarantee pain – peeing and number twos will get me every time. The pain I have at the moment doesn’t stop. The medications take the edge off of it, they make it so that I can move, can think about other things.  But as other chronic pain sufferers will attest balancing them isn’t easy. Too much and the pain is kept at bay but you can’t stay awake to celebrate the fact.  Too little and the meds have the same effect as sucking on skittles then spitting them out!  That elusive state of balance is different for everyone – I haven’t found mine yet.

Let's talk about sex

 

As if  pain putting me off sex and chronic fatigue which makes finding the energy to make love isn’t enough.  In addition my libido packed a case and an overnight bag, without giving notice went on sabbatical.  Not wishing to travel alone it invited my ability to orgasm on the all expenses paid vacation.  It accepted and thus my misery was complete.

I am on a count down - 3 days until surgery.  For the rest of the population up coming surgery is a scary thought.   I am torn between the fear of surgery.  I’ve been here before I know the way that my body normal reacts to the assault that is surgery.  On the other hand it is the light at the end of the tunnel the only solution for me now.

So that’s where I am right now, I do hope that my story is helpful to others. Will update you after surgery.  God bless D x

Please keep Dee in your prayers as she faces surgery later this week!