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Each Person is Different

on June 30, 2014

My whole life I’ve had problems with my periods.  They started when I was 11 and were instantly irregular.  They were heavy when they did come and caused me to be ill.  My Mum took me to the Doctor and was told repeatedly that “I’d outgrow this problem”.  I never did.  At 23 I was diagnosed with hyperprolactinemia due to an adenoma over my pituitary gland.  My prolactin count was in the high thousands, this prevents oestrogen being produced.  To add to the complications, I was later diagnosed with polycystic ovary syndrome (PCOS) too.  Again, this messes up your hormones.  Somehow I managed to have my first daughter naturally.  The hospital at the time did want to run a series of tests to find out why, but I got the idea that they were more interested in a paper on a woman that shouldn’t have had children falling pregnant with my condition than anything else.  My second child was born after various fertility treatments for both the high prolactin levels and the PCOS.

After the birth of my second daughter, my condition got worse.  My levels were rising and the tumour over my pituitary gland was growing. There was no concern, it wasn’t growing into anything, but it was active.  I was on treatment for a few years, but due to work and the length of time I was at the hospital every 2 months for check-ups, I stopped with the regular checkups in my late 30s.  Just before I did, for the first time since I had been diagnosed, someone told me about the link with high prolactin, low oestrogen and osteoporosis. No-one had warned me that I was a high risk of osteoperosis before.  I had a bone density scan done with I was in my mid 30s.  It seems my childhood and hobbies had prepared me well.  I loved milk and cheese, and I did a lot of running, cross country running and trampolining.  A high calcium diet and high impact exercise had set my bones well and I was showing a low risk of osteoporosis.  Phew!

For some reason around the age of 40 my periods started.  Every 28 days, then over the years 26, 24, 21, until they were roughly every 2 weeks just before my hysterectomy.  When all the tests were being carried out, my prolactin levels were still showing as being high, although in the high 900s which is low for me.  Because of this they wanted me seen by an Endocrinologist just to make sure everything on that side was OK.

So today I went to see the Endocrinologist for the first time in probably close to 10 years.  He confirmed that with both PCOS and my prolactin levels that I have been oestrogen deficient most of my life.  I asked about HRT and he said that each person should be treated differently, and that you shouldn’t just treat an issue – so surgical menopause and under 50 equates to you have to go on HRT.  The endocrinologist said that because I have been oestrogen deficient all my life, that putting me on oestrogen HRT presents more dangers than benefits, especially as I’m only 2 years off the magic 50 mark they all seem to aim for.  He dictated a letter for my GP saying that because of my history, I should not go on HRT.

The Endocrinologist also works on the magic 50 mark.  I am no longer sure if I should celebrate 50 in 2 years time as the time when no medical science has any interest in me as I will officially be “too old!”.  They will continue to monitor my prolactin levels following the hysterectomy, which should work in my favour, but they just monitor me until that magic 50 where nothing matters any more, just to ensure the tumour doesn’t start growing for some reason, then after 50 they no longer follow you up.

I am 3 weeks post hysterectomy tomorrow, and as yet I still have shown no signs of the menopause starting.  I have to really hope that the 7-8 years I did have proper periods, that my prolactin levels stayed high enough for my oestrogen levels not to rise enough for my body to get used to them.  For now, I just feel relief to have someone medical say that I don’t have to take HRT.


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