Monday, 11 August 2014

Feeling like a science experiment - Endometriosis and Me

About 7 years ago I was diagnosed with Endometriosis.  I would be double over in pain during my period, I thought this was normal, everyone complains about cramps and having heavy periods.  My boyfriend was convinced something was wrong or I should at least get checked-out.  He talked me into going in walk-in Gyno unit at St Thomas, London.  They used an internal probe to examine/scan me and found a cyst as big as a golf ball, 6cmsq by my right ovary, this is the Endometriosis.  Not only was this found but something else, I have a split uterus also known as Bicornuate uterus.

Endometriosis is a condition where Endometrial tissue is found outside the uterus. It is 'trapped' in the pelvic area usually forming cyst near and around the ovary's.

Its unbelievable that so many women can have this condition and they are totally unaware.  Some women will detect problems 7-10 years down the line of having it.

The signs of the problem can be different,
Here's a list of most of the symptoms:   
Painful periods
Bleeding inbetween periods
Pain during sex
lower back pain
rare passing blood in feaces and urine.
also reduced fertility

I would recommend if you persistently suffer from any of these conditions go an get yourself checked-out by your GP.

The whole process was awful for me at that time.  Thankfully my boyfriend was with me, he recalls the day better then me.  A doctor explained it could be difficult to have children, the flood gates opened.  I remember calling my manager at work and trying to explain what I was told. I was very distressed and crying (I'm not a crier). 

Me and boyfriend had been together for about two years and even thou we spoke about having a family, that was the last thing on our minds both in our late twenties and enjoying our lives.  Hearing something like that is very devastating.  I had become pregnant in a previous relationship in my early 20s, I miscarried but nothing was even investigated at the time.  Could this of been the cause? Lots of questions were in my mind.    

After my findings out from St. Thomas' I went to see my doctor, they sent me for other scans in Charing Cross and Chelsea and Westminster hospitals.  Eventually after about few months I had an appointment to have laparoscopy. This is a small operation that involves making a small cut, under anaesthetic in the abdominal and my surgeon was going to remove the cyst.

Much to my surprise 1 month before the surgery I found out I was pregnant.  This is what happens when doctors say its going to be very difficult to get pregnant.

During pregnancy our periods stop and so does the symptoms of the Endometriosis.  For the whole of my pregnancy and 2 years later during the pregnancy of my second son and 2 years after him being born the Endometriosis has been dormat.

There was talk that during my 2nd pregnancy I would have the cyst cut out, this birth would be a planned c-section and my surgeon would attend.  Due to my Bicornuate uterus, my first son arrived 2 weeks early, it wasn't until I arrived at the hospital to confirm my waters had broken that they realized he was breech. I had to have him immediately.

So son number 2 was planned c/section, oh no he had a mind of his own and decided to appear a nearly 5 weeks early.  Again he was breech baby.  My surgeon wasn't present to take out the cyst.

Thankfully my little boys are strong and healthy and growing ever so fast.    

Now time has moved on, I didn't have a period until my youngest son was already one years old.  I had breast fed him, so I guessing this is why.  Once my periods started up again, they were mild and gradually getting heavier and heavier. 
Now my youngest is 4 years old.  This will sound really gross but my periods are so heavy,  I wear double protection, usually a Super Tampax and long towel and within an hour I have to change.  I feeling wasted for the first 2 days of my period, I look pale/ill and feel washed-out.  I am afraid to go too far from my home or I have to make sure I'm near a toilet.  I'm armed with Tampax and towels, its awful I am so conscience I can leak I'm freaking out in mind I'm going to make a mess.

I have once been caught-out, I went to meet a friend and bled everywhere, it was horrific, I was in a busy shopping centre.          

About a year ago the pain has started to build up again, now with the combination of the blood and the pain, I went to see my GP a few weeks ago.  (I have moved 3 times in 6 years - new boroughs and GPs, she had no details on file). I explained what has happened in the past, she seems surprise at the size of the cyst. 

Last week I went for my scan.  I was actually worried nothing would be there, maybe the massive cyst has vanished.  Well, I was surprised by the Sonographer reaction.  The cyst was still there but, on my leftside.  This is so strange as my right side swells-up really hurts to touch any there near this area,  while I am on my period.  Also she couldn't see my left ovary as seems to be covered by the cyst.

Well, the Sonographer loved looking at my anatomy and told me it was very interesting including my Bicornuate uterus.  Shame I wasn't in another room there the probe was bigger. (Lucky for me sounded scary but interesting)  I was there for a while she noted the size of my uterus and cyst.  She explained that most cysts are not actually visible in the scan they tend to be tiny. My cyst is well over 6cm squared, its glasses brown.

She is going to send this information to my GP.  I am guessing I will have to have surgery, the laparoscopy to removed it.  Watch this space, I will keep your posted.   

Dont be shy to see your GP if you think something could be wrong.  I am sharing my experience with you as its not always a bad outcome.