Monday, 25 September 2017

:: COLUMN :: Advice on hearing those 3 words: "you have endometriosis"

Image courtesy of http://bit.ly/2rHJ88z

:: This column was originally posted on Endometriosis News ::


End-oh-mee-tree-oh-sis. When I was first diagnosed and this ‘new word’, endometriosis, was first mentioned to me, I had never heard of it before and I knew nothing about it. I was in my own little world - alone.

If you’ve just been diagnosed, I want to tell you that you’re not alone. In fact, there’s an estimated 176 million of us, from all different walks of life, in the same situation.

Sometimes, having a diagnosis can be the best thing. You can feel relief from knowing what’s going on with your body and what’s causing all the issues with it. But, sometimes, it can be a very daunting experience. Doctors never seem to be that forthcoming about what it can all mean, but maybe that’s because they don’t know as much as we would like them to about the personal side of endometriosis, just the hard facts.

Well, newly diagnosed sister, based on my own experience, here’s what you need to do next...

Endometriosis can only be diagnosed via laparoscopic surgery
If you haven’t had this but have been told you have endometriosis, then you need to push for surgery. You will need that definitive answer because it’s really easy to be misdiagnosed as endometriosis has a lot of similar traits to other illnesses. It’s also helpful to ask your surgeon how severe your endometriosis is and where it is in your body.

Get clued up endometriosis
Research what it is, what the causes are, what the symptoms are, what treatments might or might not help - everything! Read as much as you can on your illness. You will need to become your own advocate, because it’s only you that really knows what is happening with your body, so the more you know the better.

Realise that there isn’t a cure for endometriosis and there isn’t one treatment that works for everyone
I’m sorry to be the one to tell you, but our bodies all work differently. Some women will have found that the simplest of things will have helped them, whereas others, like myself, will have tried almost everything and will have still not found any relief. You will be told, even if you are still young, that pregnancy or a hysterectomy will cure you. Well it might bring some relief, but it also might not, but on top of them both being pretty life-altering, end of the line, things to try, they will not ‘cure’ you. Go with the simpler options first. My biggest tip: try everything that’s suggested or keep it in mind to try when the time is right, even when you don’t want to. It might help and it’s that ‘might’ that keeps me going!

Have a look at your diet and general well-being
You need to start looking after yourself, and even if your body wants the comfort of a tonne of chocolate, unfortunately, it’s not going to make you feel any better (in the long term anyway!). As with the treatment side of things above, you might find cutting out certain foods or trying different exercises helps, or you might find it doesn’t. We are all different and what works for one person might not work for another. Be mindful to set time aside for rest and to de-stress too, and most of all, start listening to what your body wants and needs.

Think about your future
Try not to be pushed into any treatments, i.e. hysterectomy or pregnancy, that might rule out your future plans in life. It’s your body after all. Be prepared to think about whether or not you would like children though as different treatment options will depend on your choices. And remember, endometriosis doesn’t automatically mean you are infertile.

Don’t go into denial
It’s happening I’m afraid, you have got endometriosis. Now, let’s be productive and not ignore it. It won’t go away - even if we all wish it would!

Get some support
If you don’t feel you have a support system around you of friends and family, and if you don’t have any support groups local to you, then get online. There are thousands of women willing to talk and support you in return for a little support back.

Speak up whenever possible
It’s amazing how many people you meet in ‘real life’ who have endometriosis and you would never know if you didn’t speak out about the disease. Besides support, you can also help to raise awareness - the more people hear about endometriosis, the more people will understand the disease.

Above all, please don't worry. We're in this together.

You can follow my Endometriosis News column here.

S.
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