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19th Feb 2019

What we should all know about the painful condition that is endometriosis

Louise Carroll

Endometriosis affects around 10 per cent of women.

Anyone who has or is experiencing it’s symptoms is all too aware of how it can impact our mood, health and life in general.

There are ways to try and combat endometriosis, but not a way to ‘cure’ it, as such.

It’s entirely worth having a clear understanding of what it is and what it causes, so as a woman suffering with endometriosis can be confident in the questions she asks her doctor and the choices she makes in relation to her body.

Symptoms of endometriosis include severe period pain, pain during sex, nausea during the period and general pelvic pain. It’s also entirely normal to have endometriosis and experience just one of the symptoms too. The fact that it occurs in the pelvic region contributes to the difficulty in diagnosing it too as there’s a lot going on in that area to begin with.

Endometriosis is caused by tissue that is similar to that of the endometrium inside of the uterus becoming present outside of the uterus. Therefore when our period arrives, along with the hormones that tell this tissue to shed – it can be very painful.

Through my own searching for explanations as to why endometriosis even exists, there are some that hint at the possibility of it being something that happens us during our own foetal development, suggesting that those cells decided to develop where they shouldn’t have, way back then.

But Dr Vicky O’ Dwyer, Consultant Obstetrician and Gynaecologist at Holles Street Hospital, and co-founder of The Stork Box, admits that it’s all quite poorly understood and no one is absolutely sure.

We do know how endometriosis behaves however. While not a perfect scenario, it does help doctors to treat symptoms. Dr O’ Dwyer says;

“With endometriosis, the tissue that lines the womb ends up outside of the womb and gets inflamed each month, causing scarring.

“If we think someone might have endometriosis, but we’re not sure, we’ll put them on three months of the [contraceptive] pill and if the pain goes away, then they probably do have endometriosis.

“Then that also means that you don’t have to do surgery.”

Taking the pill means we won’t have a period, or we’ll have a milder version of a period that’s called a ‘withdrawal bleed.’ Not having our period and so avoiding having the endometrial cells shed, takes away the pain for endometriosis sufferers, as these cells aren’t trying to separate from outside the womb, from the ovaries or the pelvis region anymore.

Another option is the Mirena coil which Dr O’ Dwyer credits with “revolutionising the treatment of heavy periods.”

The Mirena intra-uterine device (IUD) keeps the uterus lining thin by releasing a synthetic progesterone-like hormone called levonorgestrel. This stops further thickening of the endometrial cells by reducing the effect oestrogen has on them (oestrogen makes them grow), reducing endometrial symptoms.

Not every woman will be suited to the pill or the Mirena IUD, so it’s important to ask your doctor all the questions you can to find out what your very best option might be, should endometriosis be a potential cause of severe pain for you.

The only way to really diagnose a woman with endometriosis is to have her undergo a laparoscopy (a minimally invasive procedure) where a doctor will look inside of the pelvic region with a camera and if endometriosis is the culprit, the doctor should be able to see the endometriosis growing inside of the reproductive area.

While this surgery means removing the endometrial cells through ablation (burning away the tissue) or excision (cutting away the tissue), the endometrial cells can grow back, so surgery isn’t a ‘cure’ either. It’s better to try and avoid surgery, as with all surgeries – they carry risks. Dr O’ Dwyer says;

“The risks are that you’ll have bleeding, you’ll have infection, wounds – there’s a one in 1,000 chance of damaging the body on the way in with the ports, the cameras or the instruments.

“If that happens, you’ll have a scar on your tummy.

“You could end up with a bowel injury and a colostomy – that being worst case scenario – or you could end up with blood vessels being injured and needing to be fixed. That is quite rare though.”

One other option given to women to manage symptoms is an injection that blocks the endometriosis.

“That injection blocks your hormones. It’s like causing a menopause for three months and then the endometriosis kind of dampens down.

“So for people who find that the pill works for them – that’s the best option. If the pill doesn’t work, or you’re not sure, then surgery might be the next best option.”

Dr O’ Dwyer did make the point that everyone experiences pain differently. It can even be the case where someone with mild endometriosis is in agony, while someone with bad endometriosis has less symptoms.

“It’s a big diagnosis to give someone. If you do a laparoscopy and you see one little spot of endometriosis, and you’ve given someone that label for that little thing – it’s a big deal.

“You obviously have to say to them that you have seen it, but I’d be classifying that as very mild.”

So there probably aren’t many options available that would get any of us jumping up and down with excitement (to say the least) but it does seems to be a complicated issue and one that needs to be further understood.

Many women have found themselves in a situation where they experience severe period pain, feeling sick and even passing out from it. If your period pain is impacting your day-to-day life, if it stops you from going to work or doing the things you want to do, it’s strongly advised you visit your doctor. During your visit, make sure your doctor understands exactly how you’re feeling.

In my own experience, it’s a very good idea to keep a diary of all symptoms and when they come about, so you can bring this to your doctor.

Any severe period pain is entirely worth getting to the bottom of. There might be no perfect ‘cure’ as of yet for the likes of endometriosis, but even for peace of mind, it’s entirely worth doing the research and asking for help.

For the month of February, we’re #OnTheRag here at Her.

We’ll be chatting all things periods, products, and pain as we delve deep inside the uterus to figure out why we bleed and – more importantly – how we cope.

We’ll also be talking to the experts about some of the period related conditions you have heard of, plus some of the ones you haven’t.

You can follow the rest of the #OnTheRag series here or follow our Instagram account for more period related content.

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