Karen's Story "Bleeding was unpredictable"

I had been suffering from Endometriosis from the age of 13, with my first memory being of passing out on the netball court from the pain.  I had tried everything to beat this thing. I had a Mirena IUD fitted purely to help with the heavy bleeding, clots, etc... from endometriosis.  Birth control was just an added bonus but not by any means the reason.

While the bleeding I had after it was fitted was nowhere near as heavy, it became very unpredictable.  So I would start my period, it would last a few days and stop so I would think it was over, and then out of the blue start up again.  This could go on for a couple of weeks by which time I only had another couple free before the whole thing started over again.  I remember one day when I had stopped bleeding for a few days and was wearing white trousers - luckily I was at home when it restarted and my Mum spotted it – it could have been a whole other embarrassing story otherwise!

A year later I had to go in for a laparoscopy to see if they could cauterize the endometriosis and I told them to remove the Mirena while they were in there as I could not take it any longer.  I do know that some people report great things from the Mirena but it definitely was not for me.

In the end, after years of suffering and nothing working and the symptoms getting progressively worse, I had a hysterectomy. I was at a time in my life where I could make the decision to go ahead with the operation, although I will say it was still not an easy decision.  I had two amazing boys who were miracles as they did not come without problems.  I had eight years of infertility and two miscarriages before the first birth, followed by miscarriages both before and after the second.  But these things made me realise how lucky I was to have them, and I was sure I could not go through the trauma of pregnancy again, so hysterectomy, when it was suggested by the surgeon, made sense.

The operation has given me my life back; I’m no longer in crippling pain on a regular basis, with bleeding so heavy I was afraid to leave the house.  I thank God I do not have to go through that again, and my sympathy is with anyone still suffering.  I know exactly how you feel, I tried every option open to me to solve the problem - each time with renewed excitement that “this is going to be the one” - and each time to have the intense let-down when you realise it isn’t.  For me, I suffered for 30 years before I finally got my relief but it did eventually come.

Good luck to everyone in your own personal journeys as you battle this disease, I can only say don’t give up.