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“According to the Book…..”

on May 10, 2015

It has been a gripe of mine for years that Doctors still believe every patient is a text book case.  When I had my first child, you talk about your experiences with the Ante Natal Group. The number of women who had quick births and were trying to tell them something was happening, only to be told “It’s your first labour, that’s around 12-24 hours”.  One of them nearly gave birth in the lift as no-one was even prepared to check her out as it was her first, and she had only been in labour for 3 hours.

My mother had bad periods her whole life. Her saving grace was that she started going through the menopause in her 30s.  My periods started when I was 11 and they were instantly bad.  I too was saved slightly by the fact something else appeared to be wrong with me and my periods were never regular.  By my mid-teens I was being treated for PMT, by my late teens I was being treated for Dysmenorrhea.  My periods were lasting up to 10 days and I was barely able to leave the house.  By my early 20s I had asked for a hysterectomy.  My GP said I didn’t mean it, but part of me wonders what I would have done if they had taken me seriously at that point.

Over the next few years I was diagnosed with other conditions that all contributed to this, and again were put down to “well your mother had similar issues, so it’s just one of those things”.

Despite the odds I fell pregnant and gave birth at 29.  It wasn’t an easy labour (around 49 hours) and at the end of the labour I haemorrhaged.  It started straight after the birth and I was left to rest a bit, but in the UK they are so adamant that you will shower immediately after giving birth, so I was sent off to the shower.  I could barely stand.  My husband had to come with me and support me, and then I haemorrhaged again. Added with the water, it looked a bit like a murder crime scene.  They got me back to bed and decided I needed a blood transfusion.  Sadly at that point there was a shift change and the people coming on shift assumed those going off had already done the transfusion.  It was a few days later when I tried to convince a nurse that I wasn’t producing milk (the text book says you are), and they finally listened to me, that they realised I had severe anaemia.  Following child birth your vitals aren’t monitored, so even though I had been listed as needing a blood transfusion, I wasn’t monitored at all. By this point it was 3 days after the birth so I was put on high dosage iron tablets instead.  The haemorrhage was once again put down to “one of those things”.  I have a lot of those things you know.

I have been sorting out my house this week, and I found the birth plan for my second child.  On it, along with a list of my wishes, I have specifically requested an injection is given to me straight after birth to prevent post partum haemorrhaging.  It seems I predicted my “one of these things”, was about to become “two of those things”.  I did haemorrhage again, but with the injection they gave me it was less than 1 litre I lost this time and I recovered naturally.

Years go by and still I have issues with periods. I’ve been referred to Gynaecologists quite a few times in my life for various reasons, mainly due to incredibly bad periods and bad bleeds.  They talk through your history and at no point has constant bad periods from day one, and 2 post partum haemorrhages ever triggered a “Oh, this may not be by the book” thought from anyone.  Things started getting worse when I hit 40 and again the Gynaecologist put it down to family history and just one of those things.  Nothing improved, in fact, they got worse but I really didn’t see the point in seeing a gynaecologist again – my entire life they have never done anything remotely helpful for me.  By my mid 40s my periods were every 14 days without fail, my PMS was getting worse and becoming constant.  Each month those 14 days got a day less, so periods were 13 days, 12 days and so on, it began to feel like one long period.  When I did go back to my GP, it wasn’t for the periods as I knew nothing would be done, it was because I was about to stab the next person that annoyed me. It was at that point PMDD was diagnosed.

I was put on medication for the PMDD and during a check up I saw a young GP, she said that there were steps that could be taken to stop the periods, and that as the Mirena had previously failed, they were looking at some form of laser blasting. I was reluctantly referred to another Gynaecologist and again everything put down to bad luck.  He did talk through the laser surgery and also the option of a hysterectomy. He seemed surprised that I wasn’t shocked at all by the idea of a hysterectomy.  I’d had enough, the thought of having it all removed seemed a fantastic idea to me.

I had a total hysterectomy done abdominally.  The operation went well, by the book you could say.  My recovery didn’t.  I was actually seen by senior Doctors and House Officers, I even had the senior on call doctor do an ultrasound scan in the middle of the night as my blood pressure crashed and my heart rate hit over 100.  According to the book though, I was a healthy woman and had a standard operation that went very boringly, by the book.  The Gynaecologist even stood in front of me and said “nothing is wrong, it’s just a lot of fuss”.

I had a junior doctor taking care of me. Luckily she seemed to have never read the book.  She got me in for an MRI scan and at that point I was rushed straight back into surgery to have nearly 2 litres of blood removed from my stomach. I had 5 blood transfusions in total.  They suggested I may have a bleeding disorder and I should be tested.

I have now been fully tested out and was eventually referred to the Haemophillia Centre at St Thomas’ Hospital in London.  Anyone with a bleeding score of over 3 should be referred there. I scored 17.  The horror that someone who grew up with severe nose bleeds, severe periods, constant referrals to gynaecologists, bruising and haemorrhaging after both births has been put down to “one of those things” is beyond these people.  Sadly he said they usually only diagnose women after major surgery.  I have a blood platelet disfunction, my blood just doesn’t hold clots, so over the 2 days after my operation, I was left with blood trickling into me which is why I had a slow decline before the blood pool was found.

My mother had similar symptoms. She was given blood transfusions following surgery for her cancer for unknown reasons.  Both of my daughters have bad periods, and both have been told “well your Mum had it, your grandmother had it, it’s one of those things….”.  The Haemophillia Centre have written to the Haematologist at my local hospital, both of my daughters are to be fully tested.  At least if they find a blood issue with either of them, they won’t have to suffer the same way I did.

I would love to make the Gynaecologists of the world rethink their diagnosis. If you have a girl/woman with constant issues and other signs of bleeding/bruising, don’t put her down as just having bad luck – throw the book away for once and help these women not to have a lifetime of suffering.  If my daughters are diagnosed, there is a simple nose spray that can be used to give them back their lives each month.  Someone needs to re-write that damned book.


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