Living With The Agony Of Endometriosis

I have endometriosis. For many years I’ve suffered agonising pain around the time of my period which, when really bad, can debilitate me.

I go to bed, I take painkillers, I get a hot water bottle however I’ll always have my laptop with me – no matter how bad it gets. Running my own business, with a team relying on me, I never feel I can totally let go, I have to try to push through. It’s not about being heroic, it’s about being a business owner and even when in pain, I have to be available. For some women who have this condition, it’s even worse and that’s simply not possible.

When I have a bad attack of this pain it feels like hot knives in my abdomen while someone is wrapping barbed wire around my body. There are few words to describe it and I’ve had this problem for years. I was diagnosed after about three years of trying to find out what was wrong with me once I recognised that my level of pain was so much higher than most other women.

This week a report by the All Party Parliamentary Committee, supported by Endometriosis UK, has come out calling on more research into this terrible condition which afflicts so many women up and down the UK.

The report is, frankly damning and has found that women take on average eight years to be diagnosed, nine years in Wales (it seems like I was lucky!). Of the 10,000 women surveyed, 58 per cent visited their GP ten times or more before diagnosis, 53 per cent visited A&E with the pain and 46 per cent found their GPs unhelpful or very unhelpful. Many women have lost their jobs due to the amount of time they take off from work and most who have sought psychotherapy to help them deal with chronic pain, have received absolutely no support.

If you want to read the full report you can read it here –  https://www.endometriosis-uk.org/sites/default/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf

It’s time for women like me to talk about this. Periods, menstruation and all of that area of life should not be embarrassing or taboo. For some of us, the physical ‘things’ which relate to fertility are not just difficult to deal with – they are terrible, and for some women, impossible.

Some women have this condition so badly they’ve had suicidal feelings because they know they face decades of pain with little hope of improvement. 

What is endometriosis?

It’s a condition where the tissue which lines the womb – and therefore bleeds each month – is found in other areas of the body. This ‘extra’ tissue then bleeds each month, just as in the womb and that blood has nowhere to go. It can cause extreme and chronic pain, though this varies enormously. It’s also known that this condition doubles a woman’s chances of being infertile.

Treatments for this are limited however they all relate to management of the condition. This might be painkillers, or laser treatment or even full removal of all reproductive organs. However even this is not a ‘cure’ as the ‘period’ tissue in other areas of the abdomen still remain and can still bleed and cause pain.

No one knows what causes endometriosis and there is no cure – there could be one cause or multiple causes – who knows? One of the reasons for this lack of knowledge is that virtually no money is spent on research into the condition which affects many, many women. Including me.

How does it affect me?

Any woman – or indeed man who lives with a woman – will know that period pain can be bad, very bad. It can lead women to have to take painkillers each month and even have time off work to deal with the pain.

Women who do have to take time off work, or go to bed and seek support with childcare or who cannot function normally in the home, feel embarrassed by it. They feel that they should be able to cope and sometimes that message is reinforced by those around them.

For women with endometriosis it’s even worse. For some the pain is so bad that you cannot ‘think it through’ you cannot work, you cannot function normally, you simply have to endure it.

For me because I run my own business, my team know that I suffer in this way yet even if I have to go home, I do need to always be in touch. Even if my pain is terrible, I will still have my laptop. I’ve often wondered what it would be like if I was employed.

It was a relief when I finally knew what my condition was however the relief stopped there. I’m not going to get better, I’m not going to have a cure tomorrow or any time soon.

The other effect is that it’s likely I will find it very difficult to have children naturally. Funnily enough, in my case, I didn’t plan on having children anyway. However when you are told you probably cannot have them, it does change your thinking around this. For some women with this condition, it must be utterly devastating.

How it affects my mental health?

I’ve often thought to myself – why do I have this? Why this as well as anaphylaxis which I have to consider every day?

I’ve often wondered are the two related? Could my severe allergies be related to this? Why me? Why do I have to cope with this alongside another condition?

It can feel unfair – and yet perhaps there is a connection. How can we know when there has been so little research in this area. Perhaps endometriosis needs to be looked at holistically – is there a pattern between women who do have the condition or indeed a series of patterns. Does this awful condition come hand in hand with other factors?

It’s difficult for woman to say at any time ‘I’m having time off because I’ve got bad period pain’. Women often feel weak and have spent years listening to others saying ‘have you got PMT then?’ when they are a bit short-tempered or even simply standing their ground and being assertive. With endometriosis, the same concerns come into play and it’s much worse. Many employed sufferers find holding down a job difficult.

We need to acknowledge that endometriosis is a terrible condition which needs to be investigated and researched. Women and families affected by it need some answers. And for me, the answers start with people like me sharing what our lives are like with this condition.

 

 

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