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Incognito: Endometriosis is a debilitating, misunderstood illness that has impacted my entire career

Endometriosis impacts 10% of women worldwide
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Endometriosis is a condition in which the lining of the womb starts to grow elsewhere in the body, such as the ovaries, causing severe pain. Ten percent of women worldwide are impacted by the condition, and there is no known cure. This month’s Incognito blogger, a PA in a media company, tells us how devastating the impact of this ‘hidden illness’ can be.

 

I was diagnosed with endometriosis and polycystic ovaries six years ago – both of which are at ‘stage four’, which is the most severe stage.

The main symptom is crippling pain, to the point that I can’t stand up. I’ve had two operations this year, and 35 days off work.

Just last week I had to take a day off due to incredible pain. The next day I took a lot of painkillers in order that I could come into work but was so ‘spaced out’ I was sent home again. I then had to have another three days off.

Once I’m able to come back into work, things don’t necessarily feel much easier to deal with. Firstly, there’s the onslaught of work that’s built up in my absence, plus I often come down with something like a cold after an endometriosis attack, I think from generally being run down. The condition impacts your testosterone levels too, which in my case makes me short-tempered. So, on my first day back at the office after my most recent ‘bout’, I was crying in the toilets more than once.

 

Lack of understanding

One of the biggest issues that comes with having endometriosis is the shame surrounding it.

While I’m very fortunate that my line manager is the head of the company, and she has been really kind, I still get the impression that other colleagues think I’m off again ‘for bad period pains’, which it absolutely isn’t. In fact, often the pain comes during my cycle, not while I’m on my period.

And if I ever need to talk to someone other than my manager about why I need to go home, I find myself really beating around the bush, especially if it’s a man. And not because I’m embarrassed, but because I don’t want them to feel uncomfortable.

But it was worse at my last company. I sometimes had to take two weeks off at a time there, as I had very bad haemorrhaging as well as the pain. I was taking in doctors’ notes to prove that this was a genuine illness, but I was still made to feel guilty for how much others had to cover my work, so in the end I left.

This shame has wider career implications too. Because I’ve had so much time off at my current place of work, I feel quite indebted to them. Therefore, I would be very reluctant to ask for more responsibilities in order to progress my career, or a pay rise. And if I ever felt a desire to work somewhere else, it would be a huge decision as I’d worry that my future employer may not be as understanding as my current one.

Then there’s the financial implications. Once my ten days’ sick leave were used up this year, I used my holiday allowance for time off ill. Once that was gone, I had to take unpaid sick leave.

 

Future steps

A better understanding of endometriosis and its severity would certainly improve my working life, and I think this goes for anyone with a ‘hidden’ illness. My boss had no idea what endometriosis was until I explained it; how can she make adequate provisions from that starting point?

I think an extension to the amount of sick leave you can take – if you have a known pre-existing condition like this – would be a start. And more receptivity to flexible working. For instance, while I sometimes can’t come into work due to the pain, or heavy bleeding, I can still use a laptop. It would be helpful if I could work from home on those days, rather than take them as (often unpaid) sick leave, but it’s not given as an option.

It would also be a huge step if there was no more stigma around issues to do with women’s reproductive systems. Women historically have simply ‘put up’ with things, partly through embarrassment and partly down to fear that they are struggling to deal with something that other women ‘just can’, and we really need to change that. If a man at my company took time off work due to a problem with his reproductive system, it would be a bit more shocking, and – I believe – taken a bit more seriously.

In a personal sense, my medical treatment so far has been a combination of pain relief and hormone treatment, but it’s not really working. To get rid of the endometriosis would involve removing part of my womb, which obviously has fertility implications, so things are taking a long time. For instance, I need to be taken through various steps to keep my options open (i.e, having my eggs frozen), plus checks to ensure I am mentally aware of and prepared to take such a big step.

While I would love to have a child, I am of the opinion that there are other ways to have children. I’m now desperate to have the operation, as I just don’t want to be in pain anymore.