Endometriosis Month – a condition which is misunderstood

Many workplaces don’t recognise the condition, so the aim this year is to raise public awareness of the condition, its symptoms and the impact it has on people’s lives.

What is endometriosis?

It is a condition where tissues, similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.

Endometriosis can affect women at any age, and is a long-term condition that has a serious impact on your life.

I have this condition, which was only diagnosed six years ago and in some ways it was at least a relief to know it has a name. Often when you suffer so badly due to so-called ‘womanly’ issues, you feel embarrassed and ashamed as if you can’t cope when others can. You feel that others will judge you.

I suppose I should be used to that with my allergies and anaphylaxis however it’s hard for me to say ‘I’ve got this condition too’. Indeed I often wonder if it could even be related.  

From day to day, I never know when the pain from this condition is going to flare up.  It affects every aspect of my life, both personal and business.

One of the biggest problems with this illness is, no one can see anything.  They just see someone in agony, getting short tempered, due to the pain, and don’t understand why I can’t simply take painkillers.

Pain killers work, but they give me a brain-fog, which is useless when I need to be ‘on my game,’ making important decisions about the business. So I do try to keep on keeping on, until it gets so bad I have to take action.

This does, of course, impact on those around me. My fiancé, my team…I’m fully aware of that yet I try to fight it nonetheless.

We should know more about this condition and we should be researching it. Only recently I was speaking with another female entrepreneur who also has this condition. In her case it’s around her belly button and is both internal and external.

To talk to someone else who has the same experiences, the same fears and the same worries does help. It’s this which has given me the courage to speak up. There are 1000s of women out there suffering.

Statistics around endometriosis

1.      It is the second most common gynaecological condition in the UK.

1.5  million women are affected by it in the UK

2.      On average, it can take up to 7.5 years from the onset of symptoms to get a diagnosis.

3.      Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.

4.      10% of women in the world have endometriosis – 176 million worldwide.

5.      The cause of endometriosis is unknown and there is no definite cure.

6.      The prevalence of endometriosis in women with infertility is as high as 30-50%

(www.endometriosis-uk.org)

That last point is very personal to me, as I have been told I will probably not be able to have children.  In my case I have made the decision to be childfree anyway however there’s something emotional to be told you probably cannot have children. It changes your feelings around this very personal decision.

This illness, not only affects women, but the men or women they love too.

When you meet someone and start a relationship, they also start to ‘live’ with your condition, because it can strike at any time. It’s not like period pains, which can also be excruciating, but at least you know it’s only once a month.

Further down the line, as you become serious about each other, when comments about starting a family begin, you have to have tough conversations.

I’m extremely lucky, because my fiancé, Matt is understanding and supportive. He is so laid back and doesn’t worry about what other people think and that’s just what I need in my life partner.

You also need your friends and extended family to understand too, because otherwise you can spend your time fending off awkward conversations, and getting very upset.

Endometriosis and pregnancy

Endometriosis does not necessarily cause infertility, but there are problems associated with the condition, although as yet, the cause is not fully established.

The main factor affecting fertility is a woman’s age, and after the age of 38, fertility rapidly declines, which increases the rates of miscarriage and abnormalities.

Mild sufferers have an almost normal chance of conception, whereas in cases of moderate and severe endometriosis, chances of natural conception are reduced. This is because there are more adhesions that can trap the egg and stop it from moving down the Fallopian tube.

However, if varies from individual to individual.

Next time you see someone suffering with stomach cramps, don’t assume it’s a period pain and tell them to get over it.  It could be endometriosis. Be kind.