The curse of Endometriosis

I have a friend. She is a fabulous woman, and I love her dearly. She makes great cakes.

Strong, vocal in her opinions, forthright and not afraid to stand up for what she believes in, she is a passionate teacher, a strong advocate for the rights of women and girls, a campaigner for the underdog. She is also a loving wife and mother, and devoted animal lover. I have only known her for a few years. We met in a playground, our daughters looked around the same age, and so, it turned out, they were destined to go to school together and become good friends. Our dogs are best friends too, and I have had the pleasure of getting to know her and discovering all these amazing things about her.

But, I'm sure, you have already realised, this isn't just me having a love-fest about my friend. Just as I didn't know her fascinating, family history, her travels from South Africa and back; her politically active, strongly anti-apartheid family background which has surely shaped her own strength of character, I didn't know that she suffered from endometriosis.

And it is a testament to her strength that I didn't really realise not only that she has this to deal with, but also quite how debilitating the disease is. 

And it's a shitty disease (perhaps if we're using bodily adjectives, I should call it a bloody disease, but shitty sums up how I feel about it, knowing what I now know about it). It comes about when endometrial cells from the womb lining, the bits that bleed when women have a period, move to other parts of the body, set up camp, and carry on bleeding. And unlike monthly bleeding from the womb as part of the menstrual cycle, there's no where for the blood to go. Is this starting to sound a little bit horrible? My friend, it is - but please do read on.

From talking to my friend, it seems that these little territories of cell, or endometrium, form their own little menstrual cycles, too. You might be bleeding from your womb one week, the next, the little encampment that's taken root on your bowel might decide to bleed, then the patch in your lung, your liver. It's an extensive, insidious disease that seems to burrow its way through the body, embedding itself where it feels like it, and causing merry hell. It also causes chronic pain, fatigue and problems with conception. The arrival of my friend's daughter was hailed as nothing short of a miracle - and in more ways than one, as the hormonal changes did, for a time, quell the angry march of the endometriosis through her body.

I saw my friend in half term, just a few weeks ago. She'd been in hospital to have some of the endometriosis removed from her lung because she was quite literally drowning in her own blood - the endometriosis on her lung was bleeding and as the blood had no where to go, it was just filling her lungs up. Being my friend, she was keen to get back to work, to carry on. Because being a woman, she was being stoical, brave and carrying on - like women are supposed to do in the face of these 'weakenesses'. 

As surely as I know my friend, I know that this is not a weakness. I remember the horror of my own monthly period - bleeding, cramps, the hormonal raging - and basically being told to get on with it, with a little help from paracetamol and the odd hot water bottle. Women's problems; the curse. Something not to be talked about, or made a fuss of. A dark secret.

I don't give a stuff if you suggest that periods are somehow dirty and shouldn't be talked about. For goodness sake, it's part of a natural process of having children - and I have been able to deal with the physical and emotional challenges of my own cycle through use of a little marvel called the marena coil, but then, I don't have endometriosis.

My friend does have endometrioses. It's in her lungs, her bowel, her liver and plenty of other places the doctors are not even sure about. She has 5 consultants involved in her care, but until now, despite the dogged efforts of her utterly fabulous GP, there doesn't seem to have been a clear strategy for going forward. But even on a simple presentation, it's a debilitating condition. Imagine have part of your body bleeding that you couldn't stop or get to and the blood couldn't escape. Imagine that every time you went to the loo, the action aggravated the colony of angry endometrium cells on your bowel or bladder causing cramping and bleeding. Imagine drowning on your own blood because you've got it on your lung. No really, imagine what it would be like.

And now, my friend is back in hospital. It seems that her liver, her diaphragm and her lung have fused. She is having scans and will probably need surgery to resection her lung before a whole series of further operations to deal with the endometriosis they know about and also the stuff they haven't yet found. Every time I've spoken to her after a spell in hospital, there always seems to have been the suggestion that as well as the places they know about, it could be in other places too. Hopefully, now they can deal with it - but really should it have taken it to get to this awful point before she stopped having to cope and real action is being taken? 

Endometriosis is somehow seen as a woman's problem, It is, of course, related to menstruation  but did you know what happens? What it is? I didn't really either, and you wouldn't be alone, because it seems very little is known about the disease even though a study published in 2009 showed that 10% of women suffer from it - that's 176 million of us worldwide. This 'women's issue' costs the UK economy over £8 billion in treatment, loss of work and healthcare costs, and yet so little is known about it, and no research is done. I am no stranger to the wonders of medical research - my son had leukaemia, and the progress made in research meant that he had a 75% rate of survival as compared with a 4% chance had he been diagnosed 25 years earlier. Endometriosis is not cancer - but perhaps that's part of the problem Perhaps it's only seen as 'a woman's issue; so there's no need to plough money and time into finding a cure. And yet it's the second most common gynaecological condition in women in the UK, affecting a similar number of women as diabetes.

The lack of understanding and research into the disease causes huge problems. On average it takes 7.5 years for a diagnosis - which in itself means some women waiting a whole lot longer than that. It can often be attributed to irritable bowel syndrome, and reading stories on the Endometriosis UK website, it's shocking how many women are simply told, from a horrifyingly early age, that they just have to get on with it, that the pain and everything that goes with it is just part of being a woman.

Endometriosis is not part of being a woman. It's a disease, and it needs to be recognised as such, researched and dealt with. As I've discovered more and more about it, I've come to see it as Horrible. Shitty. Debilitating. And more needs to be done about it.

If you've made it to the end of this post, thank you, and thank you from my friend, who is passionate about raising awareness of this disease. And you could make her even happier by signing this petition calling for more discussion of the disease in Parliament which will hopefully lead to more research funding ensuring faster diagnosis and better treatment.