Wednesday, 3 July 2013

The whole story - so far (where I am now)



This is the first post on my new blog I have started which will be devoted to Turner's syndrome.  I am sharing here my own personal story which I wrote for a Facebook group I belong to, and while this is personal to me, future posts won't all be about me (promise) but about all aspects of Turner's syndrome that we all have to deal with in varying degrees, but this first one is just my story for now.

I'm Emma and I live in Southampton, on the south coast of England.  I am now 31.  Growing up if you'd asked me what I wanted, or where I would be by this stage of my life, I definitely would have included being married and having some children in that.  I did the usual little girl things of playing with dolls, prams, and I'm sure I did the putting teddy bears, dolls, or whatever else was around up my dresses (I knew babies came from their Mummy's tummies).  Apparently aged 3 I showed poor parenting skills when I left all my dolls out to bake in the sun on a warm summer's day!

Anyway, life went on, I went to school, did well, got good GCSEs and went to college.  Since about the age of 14 I had been thinking (although not too worried) where are my breasts? And where are my periods?  By the time I was a 17-year-old A level student and still nothing had started the doctor needed pushing, and this time I wasn't fobbed off and told to wait as I had been at 14.  I had an ultrasound of my womb, various hormone tests which showed my FSH and LH were sky high but there was virtually no oestrogen or progesterone.  The doctor was confused by this but in the mean time I mentioned my problems to a girl I had gone through secondary school with.  She made an amazing diagnosis – she asked me to show her my arms, palms up with my upper arm straight to my sides.  I did as I was asked, not really thinking what on earth she might be asking me to do this for, and she noticed the classic “cubitus valgus” (increased carrying angle at the elbow – my forearms point outwards to the side, not straight to the front).  She then said the immortal words “I think you've got Turner's syndrome, like me”.  Now SR and I had always been in front row of choir together at school as we were both small – turns out that she was diagnosed at 11 and had got growth hormone, which is standard once TS girls start falling off the growth chart.  Luckily, as it was too late for growth hormone for me, my natural height I reached all by myself of 5'1'' isn't too bad, thanks to tall parents and my mosaic karyotype (genetic make-up).  Despite her growth hormone I am still the taller of the two of us!

So naturally on hearing these words I was all “what on earth is Turner's syndrome?”.  She explained briefly, and I did  A LOT of research in books and on the internet.  It basically meant that my second X chromosome was missing (well in my case just broken) and this, you guessed it, means your ovaries are pretty damn useless, hence my FSH and LH being high trying to kick start them but no response.  The first blood sample for my karyotype got lost/broken/messed up by the lab, so another sample was taken, so about two months after being “diagnosed” by my friend, it was actually confirmed by a bona fide lab letter (which I still have somewhere I think).  By this stage I had pretty much come to realise if SR had spotted it, and realising I had quite a few more features of the syndrome having done some research, it was pretty much a full blown conclusion, but when I went to the doctors and heard the words “yes, you do have Turner's syndrome” my world still came crashing down. 

The doctor was nice in her own way, said there was more than one way to be a mother etc, asked if I had any homework I needed to get out of and if so she would write me a note so I could go home and not worry, but those things didn’t do much to comfort – I had just been told I could not have children.  I asked if it was definite that I wouldn’t make my own eggs, and the GP admitted she wasn’t 100% certain and referred me to a paediatrician (at 17, just about young enough to scrape in).  The paediatrician told me that no, definitely no egg production in my case based on the hormone levels, and also explained that due to my karyotype having some Y-fragment in a few of the cell lines ovaries would have to come out as Y-chromosome in sex cells like to be outside the body like testes, and I would be at risk of ovarian cancer in my stupid non-functioning streak ovaries.  I finally got the operation done the summer after my first year at university, after some enquiries in the Easter holiday leading me to discover I had dropped off the list!  I wasn’t too bothered by the operation as I was in the frame of mind “well they don’t work anyway so why does it matter that they’re going?”.

I went through university not really dating, and remember one tearful consultation with the doctor (don’t know what she must have thought!) where I checked that if *it* ever happened I wouldn’t need emergency contraception (not that there was anyone on the scene).  She offerred me counselling but proud stubborn me declined.

Whilst at university I was searching for God, and dabbled in a religion which allowed the practice of polygamy.  Initially what drove me from that religion and back to Christianity wasn’t theological at the time, but one particular comment from one particular man on a forum that “he wouldn’t ever consider taking as his only wife a woman who was infertile” was the final straw.  This caused me to be really angry, upset and all those other emotions as you can imagine!

I’m church-going now, and trying to get closer to God and find His way for me, but I’d be lying if I said my infertility doesn’t make me upset and angry at Him sometimes, and it’s not easy.  I am in a place where I feel that a man would have so many options when looking for a wife, why would he chose me when he could chose someone who could give him children?  The thing is, Turner Syndrome gives us more than our fair share of self esteem issues, low self confidence etc, and slightly poorer social skills, so this coupled with how I feel about my infertility isn’t really boding well for meeting a man!  Then there’s the whole when to bring it up?  Will they be scared off if I mention it too soon?  But do I want to waste time, energy and get hurt getting attached to someone who will then walk away if it’s an issue for them, and it would just feel like you’re keeping this dirty big secret and you’d be walking on eggshells, and that’s surely not healthy in the early stages of a relationship?

Oh well, hey ho, I must just carry on with life, take solace in my friends and family, the generally good health I have, that I have a comfortable life and good home, and trust God for the whole family thing I’m stressing over to be sorted out.  Some Bible quotes to finish with (if you’re that way inclined), which I WILL remember and repeat ad infinitum!:

For I know the plans I have for you, says the Lord.  Plans to prosper you, not to harm you.  Plans to give you hope and a future.   Jeremiah 29:11

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.    Matthew 6:34

For more information on Turner's syndrome:
 

No comments:

Post a Comment