| Endometriosis UK

To mark Endometriosis Awareness Month, Olivia shares her story of being diagnosed with endometriosis and what the condition has taught her.

When were you diagnosed with endometriosis?

I was diagnosed in May 2019, it took me around 4 years to get diagnosed after endless doctors appointments, seeing different GP’s and trying to get answers. Although it’s not nice to know you have a chronic condition that will never go away, getting the diagnosis was a huge turning point in my life and massively impacted my mental wellbeing knowing that I wasn’t going crazy and there was actually something going on.

How did endometriosis impact on your education?
I think I was quite lucky with the fact my endometriosis didn’t affect me in school. I started with the symptoms when I was around 17 so I was out of full time education at this point. I do remember being at college studying dance and really struggling with this and knowing there wasn’t something right. The thing it did effect most is when I decided to move to London for University in 2018 (I’m from West Yorkshire originally) and I struggled massively with the pain. I didn’t have a diagnosis so had no idea what was going on in my body which led to me developing severe health anxiety and having to drop out of university and come home. It’s something I always beat myself up about but at the time I felt so alone and was so confused with my body and needed answers.

How have you found support for your endometriosis?

When I first got diagnosed, I had no idea what Endometriosis was, when I went in for the diagnostic laparoscopy I was pretty sure he was going to find something sinister. The first thing I did was search it on YouTube. I then found Endometriosis UK, and I’m not just saying this, the resources have been so helpful. It helped me understand my condition and also gave me ideas on how I can manage my pain. I used the ‘Endometriosis in the workplace’ PDF when I started my new job and gave it to my manager so she could understand my condition a little better. I’m lucky that I have a good support network but I know sometimes people don’t understand it. My friends are all super supportive and understand if I need to stay in with a choccy digestive and a cuppa instead of go out for the evening. I’ve also met a lot of women through my diagnosis, and it’s opened me up to this brilliant community of not just women with endometriosis but general chronic pain and it’s so lovely.

How has endometriosis impacted your work?
This is the big one and the one I struggle with most. I like to work and I find it really hard how endometriosis puts a restraint on my career. Recently I’ve been really struggling with my pain and it’s had a massive impact on my job, I’ve missed so many days and as well as the pain just being horrific, it can also affect your mental health. I’ve started looking for more flexible working jobs and working from home opportunities but it frustrates me a lot that I even have to do this. I feel like I’m having to put my career second (which I know you should) and not be able to do things I maybe could of done without my condition. I think it’s important to find that balance and be able to have open conversations with your employer about what you are capable of, both physically and mentally.

What has having endometriosis taught you?

Wow, what has Endometriosis taught me. It had taught me how strong I can be. I think if I hadn’t have got this I wouldn’t have been able to see how strong and brave I can be and how much I can go through and still be smiling. It’s taught me that no matter how rubbish I feel, I am never alone, there are thousands of women going through exactly what I’m going through and by joining groups and meeting people online I have learnt to never keep things to myself. It has taught me to never settle. I’m proud of myself for not just stopping going to the doctors and giving up after the 12th time they told me it was IBS. As cliché as this sounds it’s taught me to live in the moment more. Before my diagnosis I was a very uptight person (still am a bit) and would need to have everything planned and not do things spontaneously.

Endometriosis is unpredictable and you don’t know when a flare up can happen so it makes me want to enjoy moments more and do more things in the here and now rather than waiting and having pain when I’ve planned something".

Bhavni's Story

My perception of periods, from the age of 12, were that they were all heavy and painful for everyone. Therefore, I accepted that as my ‘normal’ and carried on with life, getting through university and starting my first job. I remember thinking at the time that I would just need to dose myself up on painkillers for a few days every month and make sure I had a good stash of sanitary products in my bag, assuming that everyone was the same. Each cycle, I would have to make almost hourly visits to the toilets (carrying my handbag or stashing sanitary products up my sleeve) to avoid accidents and would feel so relieved when the day was over, so that I could get home and collapse on the sofa. I had assumed that everyone suffered in the same way each month and could see all work colleagues getting on with things, which made me feel that I also had to do the same.

At the age of 22, I was officially diagnosed with having Endometriosis. Unfortunately for me, my twenties were blighted by the condition, resulting in 4 surgeries over the decade, each requiring between 4-6 weeks off work. The surgeries spanned two different employers so it was interesting to note how different each employer’s approach was to my condition and the surgery.

The first was really supportive of my need for time off for the surgery and recovery. But when I returned, they were not in the slightest bit concerned about what they might be able to do to help me manage the condition. The second seemed less supportive of the surgery and the time off that I may need. In fact, on one occasion my recovery took longer than planned and as a result they instructed an independent Occupational Health visitor to come and see me at home and carry out an assessment. If I am honest, I understood that procedurally they needed to do this, but the way in which the visit was undertaken was really negative. It felt like they did not believe that I was actually suffering as much as I was and that I was just angling for more time off. This was difficult to take in as I was naturally feeling traumatised and fragile from the surgery, but there was very little empathy displayed. As hard as that experience had been, as a result of it, my employer was able to offer me a well planned (phased-in) return to work. In addition, I was offered a lot more flexibility in the role, which resulted in the option to work from home 2 days a week. I have to admit I was not expecting such a positive outcome from such a negative home visit and the changes that were offered really did make a positive difference in helping me to live with this condition and to carry out my job really well.

Subsequently, I have had a number of different roles ranging from running my own consultancy business to working for an employer where I was expected to be in an office with set hours 5 days a week. As I am sure you can imagine, the role with the fixed office hours did not work out well for me and my sickness record shot through the roof (ironically with a clear pattern around my monthly cycle). Sadly, I did not feel that I could talk about my condition with my employer at the time. Partly, this was down to me and my inability at the time to have confidence that this condition was one which warranted adjustments in the workplace...and partly, to do with the culture of the organisation.

Needless to say, I have learnt from that experience and am now more confident about speaking out about the condition and how it impacts me in the workplace. I am extremely lucky, as my current employer is really supportive. I have been open with all my line managers who have all responded well to my honesty (both male and female managers alike). Thankfully, I now work from home and have complete control over my diary – which makes it much easier to forecast my worst days and ensure that I have some desk days around that time. When I am having a bad day, I can be on my sofa with a hot water bottle and my lap top, and am still able to work. I recently mentioned that I have the condition in our internal newsletter – the difficulty with having these invisible illnesses is that no one would even begin to understand what you are going through in those difficult days. Therefore, I decided to mention it as part of a Q&A in the hope that others who have the condition do not feel they are alone and to encourage some greater understanding/discussion around chronic illnesses in the workplace.

Having found my inner voice to be able to be open about my condition at work, coupled with the flexibility and support of my mangers and peers has been the absolute antidote in allowing me to manage my endometriosis whilst maintaining a successful career as well.

I believe that employers should sign up to the Endometriosis Friendly Scheme as it shows a huge commitment on their part to supporting their employees. As we know, 1 in 10 women suffer with this condition, and mostly they will suffer in silence. The benefits are vast, and include:

A workforce that feel valued and supported
Greater productivity, loyalty and the ability to recruit and retain talent
Less absence and the direct financial benefit of that on the business
A clear framework to support individuals in the workplace

Ultimately, the importance of ensuring the wellbeing (both physical and mental) of employees should be at the forefront for each employer as without a healthy workforce, the business will also suffer.

- Bhavni