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“According to the Book…..”

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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Life without hormones

It seems life gets in the way of blogging. It’s been a long time since my last update.

I am now 11 months since my operation. I’ve made it through 11 months with no HRT. This has turned out to be a lot easier than I thought it would be, although I was expecting the worse with this. The one thing I can honestly say about life following a surgical menopause from my point of view, is that hormones suck big time.

I have spent my entire life since puberty battling with various forms of PMT, PMS, PMDD – whatever the current name for that decade has been. I have been able to feel my moods changing, the desire to stab someone in the forehead with a pair of scissors, just for breathing too loud, has been strong. I’ve been given pain killers, vitamin tablets, told to avoid certain foods. The best they could have done was to put me in a padded cell away from other people.

As the battle with the OBGYN people got worse (I will do a separate blog on this), I hit despair. The thing that made me see it clearly though was watching my own children hit puberty. Now I have no hormones it is quite amusing watching them honestly believe that the other one is somehow to blame for them screaming at them, and that the other one has done something so terrible (usually breathing) to cause them to be in a bad mood. With no hormones you do watch PMS in action and you can see exactly where the blame lies and you know, usually for fear of receiving a pair of scissors in the forehead, that you can’t tell that child that they just aren’t seeing things in the right way for the next week.

Hormones are hell. They affect our moods, our interactions with others, how we see and react to situations. I can honestly say, from someone who has spent most of their fertile life with more than her fair share of hormones, they are evil.

As my Mother started the menopause, her mood swings became more extreme. I can’t really put this in a nice way, because there was no nice way, she was a bitch. I don’t know if she finally recognised the problem or my sister pointed it out to her, but she finally got help and HRT. When the HRT didn’t work then my sister was brave enough to suggest my Mum try a different one. That did work. Her personality transformed. My fears about the menopause were the HRT side of things, mainly because my Mum was so bad through the menopause that she never came off the HRT until the day she was diagnosed with cancer. If I had the same personality that my mother had during the menopause, then there would have been no living with me other than if I went on HRT.

Everything I have been through has been so similar to my Mum from day one. My periods, the pain, the sickness, the mood swings, pregnancy and even child birth. I had no reason to think menopause would be any different. I don’t know why my menopause is so different, but I’m just grateful it is. I did have PMS and was finally diagnosed with PMDD – Pre-Menstrual Dysphoric Disorder, a severe form of PMS. As I was having between 2-3 periods a month, I was having permanent PMDD symptoms. If I’m totally honest, I don’t remember my Mum being bad before she hit the menopause. Her personality changed around the time menopause hit, so her mood swings would have just been the general monthly mood swings most women get.

I have to wonder why you would give someone with PMDD HRT when the hormones that are causing major issues for them start to deplete. At the hospital following the hysterectomy my past was never talked about, although my medical records show a diagnosis and treatment of PMDD. It’s been more clear to me over the last 3 months or so just how different my life is without hormones.

I am more aware of my bad moods, and they are just bad moods. Someone annoys me or does something that upsets me or causes me more work, I get angry with them. I can see mood swings in my own daughters and in others. I have an ability to stand back and deal with what is going on around me, rather than fly off the handle and make things worse. I know to just let a teenager with PMS rant and storm off, because I know nothing I say is going to make it better, but I know I can deal with her when she has calmed down and can see reason.

There are still times that I want to stab someone in the head with scissors, but I figure that’s most women, with or without hormones.

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The Dreaded Hot Flushes

Alongside severe mood swings in women going through the menopause, the other main complaint they give are the dreaded hot flushes. Speak to any woman going through this and they will describe sitting in hell and not being able to do anything about it.

I have spent time thinking about how to describe them, and the best I can come up with is this – imagine yourself sat fully clothed in a sauna. No matter how hot you become, you cannot get up and walk out the sauna though. A hot flush feels like you are burning up from the inside out and the thing that makes them worse is the panic you feel when they begin. You know exactly how you are going to feel and that this feeling is only going to get worse. There is no way to predict them and there appears to be nothing you can do to prevent them (other than HRT). They don’t care if you are awake, asleep, in a meeting, buying a ticket for a train or even if you are in the shower. Having a hot flush in a shower is quite good though, as you can cool down and wash down afterwards. Most of mine seem to come very shortly after I’ve had a shower, which makes showering a complete waste of time and effort.

After the personality changes, these were the thing I was dreading most about my surgically induced menopause.

Initially I wasn’t sure I have having them, they did start quite gradually as the natural hormones in my body disappeared completely. Once they fully started, then there was no doubt what they were. I had managed not to take HRT so was going to try and manage this too. I found out that layers of clothing worked for me. When the flushes start you know they are going to build up, so the ability to take off layers of clothing to temporarily cool me down worked both physically and psychologically. This has meant spending most of the past year wearing cardigans, even in hot weather. If I can’t get a layer of clothing off quickly enough then I seem to lose my ability to control them.

The next thing is to time them. My hot flushes last on average 2-3 minutes with the occasional 5 minutes. This isn’t a very long time in the grand scheme of things, but when you feel like you are burning up from the inside out, this can feel like it’s forever. Once I had worked out how long they were, then I knew there was an end. Again this worked on the psychological level for me. Hot flush, cardigan off, wait it out and then enjoy the feeling as you cool down again.

The last thing that helped me was working with men. I am a manager in an all male work environment. They have pointed out every single hot flush, the cardigans, the grabbing the nearest item to fan myself with. They have offered to set up an Apprenticeship Scheme for a “Fan Boy” for me. I have not once been allowed to let this get to me, they have not once let me hide away and secretly have a hot flush, my hot flushes have been very public and because of this and how it’s been working with all men, I really don’t care about them. I’m post menopausal and proud! I have no idea who I was trying to hide the fact I was having a hot flush from. To the guys here they are perfectly normal, they happen, get on with it, get over it.

The hot flushes have become manageable for me now I know how to handle them. At night they are more annoying, but I’ve solved that problem with a fan. Half asleep when they start, off comes the duvet and I cool down in the fan. Usually within 15-20 mins I’m cold and the duvet goes back on and I’m still half a sleep. As the year has gone by my hot flushes are getting fewer and easier to deal with. The biggest contribution to me managing these are the guys I work with. They made me face them publicly and they made me see the humour in having them. At one point they started a sweep-stake to see which of them was causing them.

Hot flushes are a temporary part of the menopause and I know I got lucky with my menopause and that my hot flushes are manageable and my mood swings are non-existent, so I have been able to see the funny side of this.

If you do want to know what they are like, then do sit in a sauna room with jeans, socks, shoes and multiple layers of clothing on and see what it feels like to get so hot and sweaty. Repeat that a few times and then you’ll know what it feels like to have to get through a whole day of that without constant showers to clean up.

My last word of warning. If you are going to take the whole humour approach with a woman you know going through this as part of her menopausal symptoms, do check she hasn’t got the mood swings BEFORE you make fun of her. Otherwise we are back to my favourite scissors in the forehead!

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