"en- doh – mee – tree – oh – sis"
It's not a song, it's a very common, and often debilitating condition that is not commonly talked about but is finally getting some airtime today, because the National Institute for Health and Care Excellence (NICE) finally issued the first ever national guidelines on diagnosis and treatment.
But what is this disease? It is defined as the growth of endometrial tissue (lining of the womb/uterus) outside of the uterus, on areas such as the ovaries, bowel, bladder, pelvic side wall and even liver and lungs, known as ‘endometriotic deposits’. During a normal menstrual cycle, the endometrial tissue thickens in response to female hormones and is then shed as a period. The endometriotic deposits still respond to these hormones, so also grow and shed with your cycle, however the blood cannot escape, and causes irritation and inflammation of the inside of your abdomen – think lemon juice on a papercut, times it by several hundred and do it every month….it’s no wonder that centuries ago women were diagnosed with ‘hysteria’ because the pain can be so extreme that even the toughest cookie would be understandably hysterical at times. As well as incredibly painful periods, they tend to be heavier, and can cause anaemia due to the heavy blood loss. With this ongoing cycle of inflammation, scar tissue can develop inside the abdomen, resulting in ongoing pain even when it’s not ‘Ladies Week’. This is because the scar tissue can cause the pelvic organs including uterus, bladder and bowel to get stuck together, which can result in pain on going to the toilet (for a number one and/or two), and also dreadful, deep pain during sex. I was listening to Radio 5 live this evening, and a total legend of a guy called in and was talking so openly about his sex life with his wife who has endometriosis, and how he felt so responsible for her pain. I don’t have endometriosis, but I’m just depressed writing about it, and therefore it’s unsurprising that women with the disease have a much higher chance of depression, but that awesome guy on the radio highlighted that endo can have psychological implications for men too. Most shockingly though, endometriosis is INCREDIBLY common; it affects 1 in 10 women.
As with many medical conditions, there were a couple of blokes squabbling over who was the first to describe in around the 19th century, but there is even mention of the condition and its symptoms in the Hippocratic corpus which contains works from the 4th and 5th centuries BC. So if it’s not a new condition which affects 10% of women, why are many of you hearing about it now? The report highlights that the disease is poorly diagnosed. This is due to several reasons, including absence of any national guidelines (which is what has thankfully been published today) but also due to lack of awareness amongst both patients and I’m ashamed to say, doctors. It’s quite difficult to change peoples opinions, as I hear many unfortunate stories of women being dismissed, but it’s easier to raise awareness, increase knowledge and empower women to actually stand up and say ‘something is not right…’ Some women will have symptoms of endometriosis right from their first ever period. I’ve met patients who came to the hospital after years, if not decades of dreadful symptoms, and I’m always so saddened when they say ‘I just thought periods were meant to be like this…’ We need loose the shame of talking openly about periods so that women realise their body is trying to tell them there’s something funky going on inside. It's refreshing to see lots of people opening up about their endometriosis today on social media, in light of the media coverage, so hopefully even more women will feel more confident to go and speak to their GP about their symptoms. There are also lots celebrities who have the disease, and Lena Dunham in particular is refreshingly open about it.
There is so much to cover on this topic, and I haven't even touched upon ways of diagnosing or treating the disorder, which I will be doing over the coming weeks and months. But for now my take away message is that having painful periods or pain during sex is not something that you have to put up with, and something you should definitely go and talk to your GP about. These symptoms do not always equal endometriosis though, and other conditions need to be explored which is why you need to go and talk to a professional. It breaks my heart when I see so many women saying they were dismissed by their GP. Again, a lot of this may be due to poor awareness of the disease by doctors, but we have to remember that GP’s do an amazing job at diagnosing and treating so many conditions. All GP’s will have had a slightly different education and experience, so some doctors will be great at recognising the possibility of endometriosis, whereas others may not. Therefore you must remember if you’re not happy with the outcome of your consultation, you can always go to see another GP in your practice. It’s very difficult to be confident and stand up when someone tells you it’s fine and you know it’s not. But you just have to.
And as always ensure you’re getting information from the right place. A recent study of the reliability of information obtained from googling the term ‘endometriosis’ was carried out by some gynaecologists in the UK and found many websites to be of poor quality, or inaccessible to the non-qualified reader. So always make sure you got to a reputable source if you want more information. Endometriosis UK is a favourite of mine.