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Endometriosis & Me

Posted on: Mar 10, 2020

How endometriosis has affected our CEO Julianne:

 

 I have always had problems with my stomach, having had severe pancreatitis when I was just nine. Then when my first period started, I had really painful stomach cramps. These cramps got progressively worse during my teens. I thought I was just unlucky as I seemed ot be suffering more than my friends. Or maybe I just had a lower pain threshold?

By the time I was in my 20s, I was in so much pain, I could literally, barely walk, and just wanted to crawl away into a quiet corner and curl up in a ball.  The pain was so bad sometimes it made me feel physically sick. I didn’t want to do anything other than find a way to cope until it passed.

Now I’m 30 and it wasn’t until five years ago when was I sent to a specialist, and after an internal scan, they were able to tell me what was causing the pain. It was endometriosis. It wasn’t ‘just me’, I have a condition which causes me to suffer chronic pain during my periods.

Living with endometriosis has a huge impact on my life every day. I don’t know when it is going to ‘kick in’.  It’s unpredictable and when it happens I have to go into ‘coping mode’.

Not only does it affect my private life but, also my business life.  The problem with this illness is, that no-one else can see anything.

They can only see me, in pain, snapping at people, because the pain can be excruciating, but of course, the cause of that pain can’t be seen by anyone else.  If I take a high dose of painkillers, that gives me a brain-fog, and I’m not able to function as well as I should, plus it makes me super tired. None of this helps when you are at the helm of a busy and thriving company.

It can be difficult to plan, because it’s impossible to know when I’m going to have a bad day pain-wise, which of course worries me in terms of running my business.

Strategies to help

 

To start with I was given strong painkilling drugs but I had to stop taking this because it made me so tired, that I couldn’t even get out of bed to do any type of work.

Although these numbed the pain for a short time, it didn’t last and then the pain just increased and grew. Some months the pain is more chronic than others.

The contraception pill is sometimes prescribed to help women with endometriosis, however, due to my allergies taking the Pill is not an option for me. Therefore the fact that I’m also an allergy sufferer means treatments for other women are not open to me.

 I do find that attending Zumba classes regularly helps with managing the pain; as movement can make you feel better.

In the past I wondered if there was a link between my allergies and the endometriosis, but I don’t think so. In my opinion, if anything, I think it’s more likely linked to my early pancreatitis.

 

Implications for female health.

 

After my diagnosis, the doctor asked me if I wanted children because endometriosis can impact hugely on women’s fertility.

This really shook me to the core. I have always said I didn’t particularly want children, so for me it’s not such a problem. However when you are told that the choice may actually be taken away from you – it does make you really examine whether or not you do want to become a parent. For me, now, it’s a sadness. I can imagine though, how heartbreaking it must be for the many women who have always wanted children to find this disease has taken away their choice to have them.

Luckily my fiance is both understanding and supportive of both my illness and me. Having an understanding partner in life is so important, as is having understanding business colleagues. All of them step up when I have to step down. They give me the space I need when it’s really bad and they understand the signs that the pain is ramping up.

If your partner – or work colleagues – don’t understand what you are going through, then they can’t give you the support you need, and may not understand when, as can happen with someone in pain, you occasionally snap at them!

Is there enough awareness of endometriosis?

 

In my opinion there is nowhere near enough awareness of this problem – just as with allergies.

People don’t understand the difference between mild or even normal period pain and this chronic pain that floors you – making you unable to function at almost any level. There definitely needs to be more understanding of how it affects their day-to-day life.

I strongly believe if the government could help small businesses by giving them grants to help people who have the condition, this would enable a more positive, productive workforce.

I haven’t voiced this enough, as I have always tried to hide any of my illnesses away, because I didn’t want to be treated differently. Being allergic to many things, I can often be in a situation where I’m singled out. I haven’t wanted this to become another reason for me to be left out, isolated or to be made to feel like I’m a burden, or slightly embarrassing.

But I know I’m not alone; one in ten women of reproductive age in the UK suffer from endometriosis. It’s time people need to take this illness, and its effects seriously. Therefore it’s time for me to speak out too.

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