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Endometriosis: Don’t suffer in silence

Endometriosis: Don’t suffer in silence

Starting a family is supposed to be such a magical time, but unfortunately some women find that they are affected by a condition called endometriosis, which affects 1 in 10 women of childbearing age. This was the experience of BritMums blogger Amanda from A Spiral Dance who shares her struggle. Over to Amanda:

Endometriosis is a complex condition where endometrial cells, which normally line the womb, grow in other parts of the body. It is most commonly found within the abdominal cavity, however it has been known to grow in other areas including the lungs and the brain.

What causes endometriosis?

Endometrial cells respond to hormonal changes in the same way that those in the womb do, meaning that they build up and then break down with each cycle. However, unlike those in the womb which pass out of the body through the vagina (creating a period) the blood from these cells has nowhere to escape and so it causes inflammation, pain and scar tissue. This, in turn, can lead to adhesions between internal organs.

Nobody knows what causes endometriosis (although there are several theories which can you can read about here) and there is no cure.

It sounds horrifying, doesn’t it? And for those who suffer, it really can make their lives a misery. In addition to the pain it can cause, endometriosis can also lead to infertility, fatigue, depression, relationship problems and difficulty working and/or attending social events.

And yet, so often women suffer in silence. Periods seem to be somewhat of a taboo subject still, and there is an outdated idea that pain and suffering with periods is just part of being a woman. Unfortunately, this attitude means that it takes an average of 7 years from the onset of symptoms for a woman with endometriosis to be properly diagnosed.

How do you treat endometriosis?

Treatment tends to involve a combination of surgery, hormonal treatment, and pain relief. The aim is to limit the severity of symptoms and improve the woman’s quality of life, but it can be a difficult balance to find.

Endometriosis affects 1.5 million women in the UK, a number similar to that of female Diabetes sufferers, and yet it is still so poorly understood.

Raising awareness of endometriosis

Endometriosis UK started the #toolong campaign to highlight just how unacceptable this is and the selfies uploaded so far show the massive impact this has on those who suffer. The only way to accurately diagnose endometriosis is via laparoscopic surgery, as pelvic exams and ultrasounds often appear normal. But getting a diagnosis is only the beginning of the battle…

My story with endometriosis

I have suffered from symptoms since the age of 13, first saw a GP about them aged 15, was referred to a gynaecologist at 19 and finally diagnosed at 21. Fast forward 10 years and at 31 I still haven’t found a combination that works for me. I have tried pretty much every option available, and right now simply getting through each day is a major struggle. I’ve got another 20+ years until I hit the menopause and that’s a long time to suffer.

Thankfully I have recently been referred to an endometriosis specialist, who has given me hope for managing my symptoms far better over the coming years. However I know how “lucky” I am to be under his care. I have left more gynaecologist appointments over the years in tears than I care to remember. We have a long way to go before we find a cause (and hopefully a cure) for Endometriosis, and in the meantime we need to keep talking and keep fighting for better awareness and treatment.

The chances are that you know someone who is suffering from it, without you even knowing. So please, keep talking about it, keep fighting for better gynaecological care and awareness. And if you are suffering, don’t suffer in silence – get help! Speak to your doctor, contact Endometriosis UK for support, and don’t give up until you get the treatment you both need and deserve.

About the author:

Amanda has been blogging for nearly 10 years now, and in that time she has written extensively (both on and off the blog) about a variety of health issues. Endometriosis, in particular, has had a large impact on both her professional and personal life, contributing significantly to her career choices and decision to raise an only child. She blogs at A Spiral Dance about how she is making the most of whatever life throws at her, and is passionate about supporting others. You can find her on Facebook, Twitter, Instagram and Pinterest.

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