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22 years to diagnosis

Category: Delayed Diagnosis and Multiple Surgeries.

It took 22 years to get my diagnosis. I’m in my 50s now and have never looked back since having a hysterectomy at 33 – it was then that I was finally diagnosed. I was 11 when I first got my period and back then those things weren’t talked about much so I thought I might be dying only to find out I had the ‘monthly’ or the ‘curse’ as some put it. It made me physically sick and was incredibly painful – I had many days off school as a result. My mum took me to the doctor who told me (remember, I was 11 at the time) that I would be fine once I had a baby! That seemed to be the end of it and it wasn’t until I was 17 I went back to the doctor seeking some help on my own as it had got worse. I was given some medication that basically worked like an opiate – I was away with the fairies though the pain was still there. This made it very difficult to concentrate at my new job so I stopped taking it. I never wanted to do sports or really do anything at that time of the month as it was too painful and also too risky (my periods were so heavy I was afraid of an ‘accident’). I read up on heavy periods and period pain but there was not a lot of information available pre-internet. Most of it centred around the idea that undertaking rigorous exercise would help or having a disprin would help the pain. When you are in so much pain it makes you faint the last thing you want to do is exercise and no, disprins did not work and neither did any of the other remedies of the day. I got fed up and continued to seek help from various doctors but was basically ignored or told to take a painkiller and use a hot water bottle. The last doctor I went to see told me I was being hysterical and it was all in my head. He suggested I see a psychiatrist about my problem! By this time my periods were lasting longer than seven days and sometimes I would barely get through another couple of weeks and the next one would come along. I found another doctor and demanded the pill as I had read that this might help with the heavy periods. I got one and then on the advice of my doctor I took it continuously and it seemed to keep things at bay – at least I only had to have a period once every three months or so but the pain had not abated and the periods were actually worse than before. When I was 30 I decided it was time to have a baby. We tried for 18 months and nothing happened. Sought some advice and found that since it wasn’t hubby, it must be me. No further investigation was undertaken or even suggested by the doctor at the time and because I had been off the pill for a while all my problems returned. Still no help. I eventually had a beautiful wee girl but since the birth my problems had escalated to the point I could barely cope with the seemingly continuous bleeding and excruciating pain. When I went to the doctor again I demanded an appointment with a specialist this time and after several months got it. I had ultrasound and the technician noted my overactive ovaries and shadows in my uterus. The specialist was great. He listened to what I had experienced and suggested they would know more when they had a look but the focus was on the problems with the uterus. He gave me options of trying to fix what was there or if need be, a hysterectomy if the tumours could not be sorted. I opted for a hysterectomy. When I had the surgery they found I was riddled with endo – it was growing all over the place and had been for many years. The surgery took longer as they had to remove it all and also the uterus. Oh my god, I felt so good after it – best thing I ever did! I was a new woman, until it came back (in those days there were no prevention measures given after surgery). A few years later I was in so much pain again I was fainting and could not move or breathe properly. I had terrible bowel pain. For my surgery I had a bowel surgeon as well as my gynaecologist. I a bowel resection as the endo had adhered in two places and had begun to grow through it hence the pain. More endo adhesions were removed as well as an ulcerated ovary in danger of exploding. It was a long surgery but so far the last one I have had to have. Since then I have had a much better mostly pain free life; the gynaecologist suggested that once I hit menopause it will improve more. So far so good. Unfortunately my daughter has also been afflicted with endo but I was onto it straight away and she had her diagnosis within two years. Still two years too long in my book even when they knew my history. Things have come a long way but they still have a way to go. You know your body better than anyone else – just because they are in a position of authority don’t let them tell you its all in your mind, its just normal period pain, “here, take some more of these drugs”. Do your own research, keep insisting or find a doctor who will listen to you. Getting diagnosed early and having appropriate treatment can literally save you.

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