27th March, 2020

Endometriosis Awareness

Endometriosis, a condition which affects 1 in 10 women and yet has very little awareness or understanding. This being Endometriosis awareness month and being a sufferer of the condition myself, I thought I would share my experience, give some tips on how to manage it at work and what support you can give employees with the condition.

Beginning of the Journey

In 2011 I went into hospital with severe, what I thought was stomach, pains. I was kept in for tests, ultrasounds, x-rays, blood test and various other things which I can no longer recall. After a long wait and preparing myself to stay in overnight I was told, in a very brief and quick way, that I likely had endometriosis, and this was basically internal bleeding from my womb yet I could go home. No further instructions or information were given.

I called my and partner cried down the phone. I was exhausted, confused and scared.  I asked him to come back and get me. This I was to learn was just the start of a long horrible journey with lots of ups and downs, anger and frustration and feeling hopeless.

What is it?

You might at this point be asking what endometriosis is, which is exactly what I was asking myself 9 years ago. This is the information for endometriosis from the NHS website:

Endometriosis is a common condition where tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body.
It can appear in many different places, including the ovaries, fallopian tubes, inside the tummy, and in or around the bladder or bowel.
Endometriosis mainly affects girls and women of childbearing age. It’s less common in women who’ve been through the menopause.
It’s a long-term condition that can have a significant impact on your life, but there are treatments that can help.

Lack of Awareness

You might be thinking, “oh its a common condition, there must be a lot of help” or “how is it so common but I have never heard of it,” here lies the problem. Endometriosis affects 1 in 10 women yet however it takes an average of 7.5 years to be diagnosed. There is little understanding about it.

I have lost count of the amount of times I have been told how it’s just bad period pains or that I don’t look ill. I am in my 9th year of suffering from endometriosis and I have yet to be formally diagnosed.

I visited the doctors 3-8 times a month every month in the first year on average and then once every month after that. I was on disciplinary for long term sickness at work because of it and I worried constantly about losing my job, money and how long I would have to endure this. No one at my place of work at the time had heard of it and without a formal diagnosis it was hard to explain how severe and debilitating what I was experiencing was.

Diagnosis and a Break from the Pain

It took me changing doctors after giving birth to my daughter and telling the new GP that I had endometriosis for my case to be accepted by healthcare professionals.
At this time, as it so often happens, my symptoms seemed to have disappeared due to giving birth. I was told that having a baby would cure the issue for a while, but the condition also would make it hard to conceive.

I found both of these to be trye. I had a long 3.5 years to wait for my amazing daughter. I also had a blissful year after her birth of having pain free periods which would grace me with their presence with hardly any issue at all. When the pains did return I found out shortly after I was pregnant with my son so was pain free again, until recently.

The constant struggle with endometriosis has been a long and horrid one and it’s return has really affected me emotionally more than I expected. The glimmer of hope I felt and joy of having no pains when my periods returned is indescribable. Finally, the days of worrying how the next one would affect me or if I would feel pains at any point in the month randomly, I thought were gone. Yet here we are again; all these worries and fears just came flooding back like an old nightmare you remember from years ago that still haunts you and keeps you up at night.

One Less Stress

This time however, it will be different. I have a great employer who understands how this is a part of my life and wants to make sure that I have everything I need to be able to work with little disruption. They understand that I will be in pain and have times when I cannot work, but know that I will always make up for it. I have let go of the worry I had before and can concentrate on looking after myself.

How I Cope

 Things that help me when I am suffering are:

  • Pain Relief – make sure you speak to your doctor and get something that is right for you.
  • Hot Water Bottles – the heat can be a great relief when the pains are bad, baths are also good.
  • Sleep – sometimes only sleeping through the pain can help, if you can get to sleep, try and rest as long as you can.
  • Light Meals – regular and small meals are better for me as feeling full can make the pains worse.
  • Doctors – I make sure I am regularly in contact with the doctors as pushing the issue is often the only way you will get help. I take print outs and I am clear on what I want out of the appointment
  • Support Groups – I am part of a few support groups and there are a lot of them out there. It really helps to speak to people who are going through the same thing.

 How Employers can Support

 It is highly likely that there is somebody working in your business that suffers from this condition. Whilst you don’t have a cure, there are so many ways in which you can support them through this journey.

  1. Regular Breaks – Sometimes just walking around or sitting quietly in a corner can help. Waiting for the pain killers to kick in or for the hot water bottle to ease the discomfort. Allowing a staff member the freedom to take this time out, and make it up at a more convenient time, not only allows them to focus on feeling better but will gain loyalty by return.
  2. Flexible Hours – Sometimes whole days are a no go for anything when you are suffering. Allowing staff flexi time where achievable can be a great relief for anybody suffering from long term ill health.
  3. Desk Assessment – An up to date desk assessment can be the difference between being comfortable and forced to take a day off work.
  4. Listening – Just be there to listen. Don’t shy away from the subject. The person suffering might be embarrassed ande upset about what is happening; make sure they know they can talk to you and ask for your support.

More Awareness

With increased awareness, we hope people will be diagnosed sooner and receive the help they need quicker. Until then the more support we provide sufferers with, the less they will worry about one area of their life that this condition affects.

Please if you also suffer or think you suffer from this condition, seek medical help. Don’t give up seeking a diagnosis, don’t be too ashamed to ask for support and don’t give up hope.

If you are an employer who wants to learn more about how best to support your staff, please contact us.