Thursday, 2 August 2012

Gemma: My Infertility reality

There is no such thing as infertility in a woman that has successfully conceived and carried a child I have been told; this is something that I have clung to throughout the last year as I have been unable to conceive a rainbow baby.

Today after a year and 13 days I have a diagnosis; an explanation as to why my monthly cycles have all but vanished. I have a microprolactinoma; in fact I have two.

What does this mean? It means that I have two small tumours sitting on my pituitary gland; tumours - Christ that's a scary thought when I read it back and yet I was never scared about the possibility more I was scared that I would have something that would prevent me getting pregnant again. Two small benign tumours I'll take gladly; these two tumours I have called Bert and Ernie - it makes them comical characters in my life rather than two tumours that could possibly prevent me ever conceiving again without medication.

I wanted to share this on here because it has only been my determination and certainty that something wasn't right with my body that I have got as far as I have with the doctors; Claire's blog regarding her serious and rare condition prompted me to want to write this so that other women may recognise the signs of a prolactinoma and get it treated quicker than I did; it isn't as serious or heartbreaking as that but it prevents pregnancy and affects fertility and I think its important that it is recognised and women have someone who has been there and who understands. I also want women to believe in themselves - if you are certain and confident that something is wrong and you know your body better than anyone then don't let the doctors tell you it is stress; that you are imagining it; be firm and don't give up.

My periods never really came back after I had Isaac, this was not how my body works. My period has come every 28 days since I was 13; without fail. I have lost my best friend when he drowned, I lost my grandparents to cancer, I suffered a breakdown due to serious depression, my marriage broke down and I left for a while, lost my pride and joy when my horse died and throughout it all, regular as clockwork my period arrived; come rain or shine every 28 days.

I believed the doctors at first when they told me the absence or irregularities were down to stress - emotional and also the stress my body went through giving birth; after all I've never given birth before how would I know otherwise? Each month that my period failed to arrive I became more down and yet my stress levels after the loss of Isaac started to level out - I was coming to terms with my grief and becoming more stable and yet if anything my periods became more bizarre.

We suspected poly cystic ovaries and I may in fact have this also although my consultant now doubts this; but it was weekly Dr's appointments as I pushed and pushed the doctors and yet still in my heart I knew there was more to it. My milk had come in after having Isaac and have leaked slightly ever since - I found this upsetting, a constant reminder that I was never able to feed my child and yet this was another sign something wasn't right.

A prolactinoma is a benign tumour (non-cancerous swelling) in the pituitary gland. Prolactinomas make large amounts of a hormone called prolactin. A prolactinoma occurs when some of the cells in the pituitary gland (the ones producing prolactin) multiply more than usual - they can appear quite spontaneously and from the research I have been able to do they can happen after pregnancy which raises the prolactin levels. About 1 in 10,000 people develop a prolactinoma so they are fairly rare, completely non life threatening I'm not sure that I would have even bothered to push had I not been trying to conceive. My symptoms were obviously the irregular periods, the leaking breasts (called galactorrhoea) but also I had additional hair growth on my face and body - I understand you may also experience a reduced sex drive as a symptom.

There can be more serious effects and symptoms and I would recommend that if you have any concerns you go straight to your doctor and ask them to run tests. I had a simple blood sample to check the level of prolactin in my blood, the normal level of prolactin is less than 400 mU/l. A very high prolactin level (>5000 mU/l) usually means that a prolactinoma is present. Levels in between may be due to a prolactinoma, or to other causes. My levels were not excessively high around 600mU/l and were missed initially by my Dr or at least discounted. Had they picked it up I would be months further along but hey I'm there now!

This was followed up by a referral to an endocrinologist who sent me for a CT scan and finally I have a diagnosis.

They will always be there; they may get worse and grow with a pregnancy but it means that with medication my chances of my fertility returning are high. Now I just have to work with the consultant to find the right levels to get my cycles back. I'm impatient for this to happen so I can move forwards and get that positive pregnancy test as soon as possible. I feel frustrated that it has taken this long to get here and I wish I'd had more faith in myself earlier, but its difficult to be too negative after all I was grief stricken and heart broken; who has the presence of mind to analyse their periods after such an experience?

1 comment:

  1. You are so strong Gemma, although you have another hurdle to get over I'm so pleased that your future looks more positive. The more life goes on the more you realise how important it is to follow your instincts, I know I still need to do that more!!