as part of our research for a new piece of writing addressing fertility and endometriosis, we chatted to actor Hannah McIver about her experiences. 
we believe there should be more awareness around gynaecological issues such as endo, so sharing this interview is an effort to do just that.

Photo credit: YellowBelly

What has your journey with endometriosis been like?
I started getting pain in my pelvic area when I was eighteen. I had pain every single day for a year before getting my diagnosis of endometriosis. I visited my GP numerous times, only for them to mention the possibility of IBS, pelvic inflammatory disease or simply just experiencing painful periods. Endometriosis was never mentioned.

It got to the point where I started to doubt myself and wonder if I was making it up in my head. All the doctors were sending me away, basically telling me that they didn’t know what was wrong with me. So you can imagine if professionals are telling you this, they must be right! It got to a point where I just couldn’t take it anymore. I was lucky enough that my family could pay for private healthcare so we booked an appointment with a gynaecologist. And that is where my diagnosis started.

Endometriosis was mentioned and more information was provided and I finally felt that someone was helping me.

At this point the gynaecologist didn’t know for sure that it was endo, she would have to do a laparoscopy to know for sure which is quite invasive so even she had to eliminate anything else it could be with scans which was more months of waiting. I eventually was booked in for a laparoscopy and I had endometriosis growing everywhere - on my bowel, bladder, ovaries. This official diagnosis was extremely bitter sweet; I finally had an answer but endometriosis is a chronic illness with no cure which was extremely overwhelming. The average amount of time it takes to diagnose endo is 7-10 years, so I consider myself to be ‘lucky’ however one year in constant pain and no help was still horrific and extremely damaging to my mental health.
What is something about endo that you would like everyone to know?
When you are suffering with pain over a long period of time you have to learn how to live as best you can and not let it ruin your life. Because of this, most of the time we probably look absolutely fine on the outside! Just because we look ok, and we are managing to function does not mean we are exaggerating our pain. There will be some days where the pain is so bad it will be debilitating and life has to come to a halt but most days you have to learn to cope, manage the pain and chances are you will have got used to the pain. If someone who isn’t suffering with chronic pain all of a sudden was to feel what we feel, I guarantee they would put it at a 10/10 on a pain scale. However we would probably put it as a 4/10 because we’re living with it. This is why pain scales are no good when asking someone who is suffering to ‘score it out of 10.’

I want people to know that endometriosis isn’t just a bad period. Cramps and pain, what you would call a bad period, is normal but it’s when the pain gets so bad you can’t get on with daily life you should visit a doctor. Please don’t be embarrassed, it’s worth getting checked out as more damage can be done if you leave it.

I want people to know that it’s really bloody painful (haha!) and our pain is valid. Just because you don’t know what it feels like doesn’t mean you can’t sympathise. There is nothing worse as a sufferer of endo than feeling that people don’t understand and are brushing it off as it probably just being a bad period.
Do you think there should be more education around women's gynaecological health and fertility? 
I definitely think there should be more education of women’s gynaecological health and fertility. In schools we should be taught about normal and abnormal periods. We should be taught more about the contraceptive pill. I remember it being mentioned but not in depth as much as it should. The fact that it can take so long to find the right pill for you and the side effects should be talked about. Literally everything about the female body and what we go through should be talked about more. Boys should be taught about this too - there is such a stigma around women’s health and something needs to change. If they’re taught this from a young age in schools hopefully women wouldn’t be nervous to visit their GP, or to tell an employer what they’re suffering with and why they need time off. People wouldn’t be judgemental or freak out when the word vagina is used or anything else to do with the female body. Wouldn’t that be nice?
What has your experience been emotionally and / or physically? 
After finally getting my diagnosis, I started suffering with severe anxiety and depression. The length of time it took to get my diagnosis and not knowing if anyone was going to find out what it was had a huge impact on my mental health. The diagnosis itself had a massive impact on my mental health - knowing that it affected fertility, there was no cure, I’d have to learn how to live with it all in the summer before I was heading off to university was terrifying. I’d never been an anxious person before this and still to this day I suffer and I probably always will. Constantly worrying when the pain will be back or when it will go. Whether I’ll have to take time off work and whether people will understand. So many things that come hand in hand with endometriosis. I get depressed about being anxious about having endometriosis. It’s a vicious cycle that you learn to manage.
Any advice for those struggling with severe period pains or endo associated pain? 
Things I can recommend to anyone experiencing bad period pains or endometriosis or anything else with similar symptoms would be to get yourself a really good hot water bottle! It’s such a comfort and I find that it really helps. Obviously I can only speak from my own experiences, as I know heat aggravates the inflammation for some people. But these are all things that have helped me. I don’t drink caffeine and I try to eat and drink as much anti inflammatory products I can; turmeric, ginger. I try to stay away from gluten and dairy. I drink a lot of water and stay hydrated. None of these will fix you, but hopefully should ease the pain a little. I have a TENS machine which works wonders, period patches from BeYou which have menthol in and create a cooling effect. If you are suffering from painful periods without a diagnosis of endometriosis know that cramps and pain, what you would call a bad period, is normal but it’s when the pain gets so bad you can’t get on with daily life you should visit a doctor. Please don’t be embarrassed, it’s worth getting checked out as more damage can be done if you leave it.'
What have you learned about yourself as a result of endometriosis? 
That I am so strong. I am strong enough to conquer my worst fear whilst in pain. Recently I had to travel to a different country for work. I was in pain the whole trip, I was taking painkillers every 4 hrs, but I did it. I didn’t die, yes it wasn’t pleasant but I got through it. When I was first diagnosed I couldn’t leave the house as I was too scared to be in pain and not be in a safe space. I travelled to a different country and managed - this was huge for me. I have learnt that it’s better to talk about what you’re going through. That way it doesn’t eat you up inside and you feel that you have somewhat control over this debilitating illness. If someone gets weird after you’ve opened up to them about what you’re going through, that is on them. You were strong enough and brave enough to confide in someone. The fact they haven’t responded in the way you’d have hoped is on them. It says more about them than it does you. Keep talking because you will find someone who will listen and sympathise. Don’t suffer in silence. 

It’s really hard not to think, ‘why me?’ ‘Why can’t I just be normal?.’ But the sooner you accept that this is what you have, and you will have to make adjustments within your life then it makes it so much easier to feel in control of the situation. Now, of course I have days when I will feel super down about it and just want to be ‘normal’ but it’s learning to rewire your brain into thinking 'I will not let endometriosis define who I am.’

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