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?